A Day in the Life of Max and Co.

Has it REALLY been a month?

2012-01-31T20:56:00.002-07:00

I realized that it had been a good while since I posted anything about "A Day in the Life of...." but when I logged in this evening I realized it had been a whole month. Yikes! Where did the last 30 days go? I'd like to say that there's been lots and lots of exciting stuff going on in the Marangella household but sadly enough we've been pretty boring. Although God knows I'll take boring over our usual brand of "excitement" any day!

To be honest I logged in tonight feeling inspired to write something profound. After all, with a view like this who wouldn’t be inspired?

And as if this view wasn’t inspiration enough there is the added bonus of sitting in a very quiet hotel room. No, I have not left my family although as I sit in a room that someone else has cleaned, watching a TV show I picked, and not screaming at anyone to do homework or get ready for bed I must admit that the idea of not returning to our insane asylum has actually crossed my mind! The truth of the matter is I am traveling this week to a client site in Montana and I thought I might find something profound to share, some words of great wisdom that have been rattling around in my head but to be honest….I got nothing! In fact, I think I’ll crawl in to bed, find a movie I want to watch and hopefully fall asleep peacefully and not from sheer exhaustion….

Here’s to a more insightful post in the near future and more business trips to quiet hotel rooms!

December in Pictures

2011-12-31T21:27:00.061-07:00

What December meant to us....

Max's first ever clarinet recital

Benny Goodman lives.....

Zoo Lights

Accepting a donation for Max's Market from the generous folks at University of Phoenix

And perhaps the most exciting outing of all........earlier this month we received a call from our favorite Diamondback, Willie Bloomquist, asking if we'd mind him naming his new foundation at Phoenix Childrens' Hospital after Max.....

....And this is how the "Abe and Max Fund" at PCH (http://www.abeandmaxfund.com/) was born

Ready to deliver the new electronics to the kids at Phoenix Children's

The excitement of Christmas morning

Gee, I think he likes this gift! Thanks Santa!

It's Still Good....

2011-12-08T21:45:00.001-07:00

Despite a bit of a scare yesterday concerning the CAT scan results of Max's heart and the status of his aorta and Mitral valve everything is fine, or in the words of the cardiac surgeon "perfect". Of course Max's "perfect" is relative but it's still better than "not perfect". We went from once a year visits to another valve replacement back to once a year visits in slightly over 12 hours. Just another whirlwind of emotions in the world of raising a chronically ill child.

So indeed it seems like we're done here at Hopkins for a while. Although it was decided that we could resume our every 12 month pilgrimage to our medical Mecca we have decided, together with some of the doctors, that we will return in June. Basically this decision was motivated by a few things, one, everyone thought one last check wouldn't hurt and two, more importantly we wouldn't get stuck here in the winter anymore. Obviously, although I don't want to return so soon I just couldn't turn down dispensing with our winter tour of duty.

Overall this has been a great trip and it feels good to leave knowing that Max is doing well. In fact this is probably the best he has been in a very long time. Perhaps we are finally getting some well deserved "down time". We can only hope....

It's All Good....

2011-12-06T21:27:00.002-07:00

.....so far. Today we finished Day Two of our "Hopkins Holiday" and we have received only good news from the doctors! For the first time in a very, very long time everyone seems happy with Max's post-op status. Our G.I. doctor actually said he finds Max interesting (and who doesn't?) but he DOES NOT worry about him. I'll take that and run.

All in all it looks like we might be back to yearly visits to Charm City! Of course, it's the cardiac surgeon who has the last word on this and we don't see him until Thursday afternoon. Unfortunately, it wouldn't be the first time he has changed our plans, so I'm just cautiously optimistic at this point. But in our world any flavor of optimistic works!

The trip out was good if you overlook the 15 degrees in Denver and the fact that I got us horribly lost in the "hood" in Washington....what's a trip without a little excitement? When we finally arrived in Baltimore we were greeted by a great group of girls who had come to Children's House to serve dinner to the families. Below is a photo of Max with his girls.

Keep praying that the rest of our news is all good!

Max's Welcoming Committee

Praying Max doesn't check the blog....I sort of promised him I wouldn't post this "embarrassing" picture of him in his super-sized paper shorts snapped just before his appointment with his Orthopedic doctor.

Iron Chef

2011-12-05T18:40:00.001-07:00

On Saturday, in the middle of the mayhem of preparing for Hopkins, Max was invited to be "pastry chef for the day" at The Phoenician, a very swank resort in Scottsdale. The task at hand? To help finish the largest gingerbread house in Arizona!

After watching the Food Network for years and years Max was certain he was up for the challenge and was sure to offer the Executive Chef and the Executive Pastry Chef a tip or two he has learned watching many episodes of "Iron Chef". Not too sure what they made of Max and his suggestions but everyone was gracious and provided all of us with a lovely morning.

It's not often that we get to rub elbows with the rich and famous!

Dressed for the Job

Hard at Work

Learning from a Pro....Executive Chef at The Phoenician

It Takes a Village to Build a Gingerbread House

Setting Up the Train

Finishing Touches

Satisfied with a Job Well Done

The Hike to Hopkins

2011-12-02T13:21:00.001-07:00

Sunday’s the big day…the pilgrimage back to Baltimore will commence! I’d like to say that we’re packed and ready to go but alas that is not the case. One would think that having done this trip at least a dozen times I would have it down pat but somehow I do not. Perhaps I’m so good at it I no longer fret over the details, perhaps I’m just plain lazy and unmotivated, but the most likely cause is that I just don’t want to go!

There are several reasons for this: one, it’s December in Maryland which means cold and gray weather, two, the week is never anything more than a medical marathon running from appointment to appointment to appointment, and last, but most IMPORTANT is that I panic about receiving bad news. This past year has been so tumultuous I just don’t think we can handle much else so we’re asking everyone for prayers for only good news!

I’ll be updating all next week so feel free to check back in, have a great weekend!

A Championship Season

2011-11-27T22:27:00.005-07:00

Just a few pics from the Cardinals' Championship Season. What a joy it is for Max to have this wonderful opportunity to play, albeit at his own pace, a sport he loves so much with friends that he loves equally!

A little pre-game strategizing

Ready, set....

.....go!

Post goal celebration

Pass...

Running his "heart" out

Champs, on and off the field!

Hoping that everyone had a great Turkey Day and wishing you an even better week!

An Unexcused Absence

2011-11-16T14:46:00.004-07:00

As of late there has been so much and yet so little going on that I just haven’t posted – no excuse really I just haven’t had a clear moment to think about things. Too much rattling around in my head I guess…..

My first priority has been getting us set for Hopkins. Although it feels like we just left I find myself in the middle of trying to hammer things out for our trip back the first week of December. This trip will be mostly post –op stuff (I can’t believe we are already six months out from that nightmare) but because we’re now up to more than seven specialists our week will be packed. It’s incredible to think that just four years ago we went to Hopkins to see one doctor, have one surgery, and be on our way. Since then we have learned so much about Max and his yet to be named syndrome that we are now seeing so many specialists it makes my head spin. Coordinating everything in one week seems like such an insurmountable feat, but thankfully everyone at Hopkins is so accommodating that somehow it all works out. We are fervently praying that everything will look so good that they’ll cut us loose for a bit and put us back on a once-a-year schedule. While I am counting on nothing, because Max is nothing if not surprising, it would be so nice logistically, financially, and emotionally to only have to make the trip once a year. Now I just have to convince the doctors that a summer schedule works much better for a bunch of thin blooded Arizonians!

In other news, Max is drawing to the end of another Fall football season. It has been especially sweet this time around to see him running down the field with less fatigue and difficulty. Thanks go out to Kids Playing for Kids for giving Max a chance to play and to Dr. Vricella, heart surgeon extraordinaire, for giving him the ability to play. Needless to say we have a lot to be thankful for this year!

As always, thanks so much for checking in on us!

Anger

2011-10-19T17:33:00.001-07:00

Webster’s Dictionary defines “anger” as:

A strong passion or emotion of displeasure or antagonism, excited by a real or supposed injury or insult to one's self or others, or by the intent to do such injury.

Anger management experts define “anger” as:

Anger is defined as a strong feeling of displeasure or hostility and is a root cause of many problems, unless an effective form of anger management is used.

Today I am a very strong candidate for anger management classes. After hours and hours of dealing (read arguing) with United Healthcare over their coverage, or lack thereof, of Max’s most important cardiac drug I am absolutely fuming! The highlight of this exercise was when a call-center representative, probably making slightly over minimum wage, asked me why the doctors just didn’t change the medication to something else. I asked her when she had graduated from Medical School and thus felt qualified to suggest another drug. I don’t think that helped my case much but at that point I felt it was better than cursing at her.

And so yet another appeals process has begun. I wish that I had started a running count of these processes when Max was born, surely between his two insurances I have gone through hundreds of appeals. The beauty of it is that I always win, but it usually takes months and months of soaring anger levels and blood pressure values. I have told these companies on more than one occasion, “you can do what I’m asking for now or you can waste six months and dozens of hours of resource time and expenses and still do what I’m asking for, you choose.” Again, this doesn’t win me any popularity contests with insurance companies but it is an accurate representation of how these things go. It’s just a long, slow, painful dance that parents of chronically ill children know far too well and although we are familiar with this dance it still sucks all the life out of us each and every time. I’ve said it before and I’ll say it again, this is without a doubt the part I hate most about managing Max’s care. Ten years later it’s the same garbage over and over again, the only difference is I’m now 10 years older and I’ve grown weary, cranky, and angry…..

…..and thus my candidacy for anger management classes.

This and That....In Pictures

2011-10-07T17:55:00.007-07:00

I realize that I have been SUPER bad about posting lately but the kids have so much going on with school, sports, and the ever present doctors' appointments that I can't tell if I'm coming or going! So in a feeble attempt to update everyone on the "goings on" at the Marangella Ranch, here's some pics of "Fall 2011".

What's fall without a little baseball? Are you checking out these seats RIGHT behind home plate? His smile pretty much sums it up....

Giving "knuckles" to Gonzo, one of his favorite baseball legends!

Max decided to introduce himself to the AZ Diamondback's President and other dignitaries......

....is it me or does this guy's face say, "Who the heck was that kid?"

The excitement of Junior Year Homecoming....for Ellie. Michele and I were dying, where did that girl in heels and a strapless dress come from?

Watching baseball play-offs and harassing his big sister.

One pretty girl wasn't enough for Max. So he decided to pose with Ellie and her friend Becca.

Bye, Bye Coumadin!

2011-09-17T19:44:00.007-07:00

It's official!! This week after hitting the three month post-op milestone and a GREAT appointment with Max's cardiologist he is no longer taking the dreaded blood thinner. No more constant blood draws, worrying about the resulting blood levels, and most importantly no more living in fear of a cut or bruise. We all feel like we've been liberated from what I have referred to these last months as the second phase of hell this valve replacement has been.

Coumadin is gone and Max's two most recent echo cardiograms show an incredible aortic valve repair, a high functioning heart, and very little if no leakage from his other valves. All things that seemed impossible three months ago as we sat in a pediatric intensive care unit with a child who refused to play by the "open-heart surgery recovery book". Once again in his own time and his own way Max has succeeded in surprising his parents and his doctors. Why do I ever doubt this kid?

Speaking of doctors I am overjoyed to report that we have FINALLY found a fantastic pediatric cardiologist in Phoenix. Another thing I thought impossible just three months ago (see my earlier post of June 29th). This doctor has been wonderful to work with, he called me several times a week to discuss Max's coumadin labs, sits with us through the entire echo and describes in detail everything he is seeing, and is incredible with Max. One of the things I admire most about Dr. Puntel is that he actually WANTS Hopkins opinion and instructions regarding Max's care, he ASKS for it! What I find most interesting about this collaborative spirit is that it's coming from a doctor who I would actually trust to make his own decisions about Max's care. That's something that hasn't happened in many, many years. Fingers crossed that Phoenix doesn't cause this man to run screaming from this city.....

The Day That Changed Our Lives Forever

2011-09-11T19:02:00.004-07:00

Ten years ago today I, like so many, remember exactly where I was when the Towers were hit. There is so much of that day that is seared into my memory, I relive it often with such clarity it still leaves me in tears.

It was very early morning here in Phoenix, Max was still hospitalized since his birth in May and was in fact scheduled for major surgery that day. I was a wreck because this surgery was different, it was going to give us a rather definitive answer regarding much of Max's future. Just before dawn the nurses "kicked us out" with orders to go home to sleep, take a shower, and come back ready to face the day's events. When we pulled out of the parking lot in downtown Phoenix the only "event" that had me terrorized was Max and his precarious situation. By the time we got home the phone was ringing frantically. With a four month old baby in the ICU a ringing phone is never a welcomed sound. As I ran to it I was praying for a wrong number or a family member who just couldn't remember time zones. It was my mother, sobbing, telling me to turn on the TV. As the picture came on I saw the second tower being hit. Tower #2 where my father had worked for much of his career, where he had missed the first World Trade Center attack years before because he had just been transferred to California. I remember gasping and falling back onto the bed, I'm a New Yorker and that was home. I had spent a lot of time in those buildings and heard stories from my father's coworkers about getting out in '92. The horror, the terror they had felt, the blackened hallways, the smoke....but this was worse I could clearly see that this was worse.

As I tried to comprehend what I was seeing I remember selfishly thinking of nothing other my own children. I screamed to Michele to get Ellie out of the room, at barely six years of age I did not want her to see the horrific scenes being shown. She was already overburdened by the months of stress we had been living since Max's birth and I worried that this might just be a breaking point for her, she had become a mini-adult in these last few months but in reality she was just small child.

My next thought was of my second child, laying in a crib miles away from me, probably being prepped and sedated for surgery. I panicked, I knew the country would be on high alert and I knew that meant no "elective" surgeries would be performed that day. I quickly hung up with my mother and called Max's nurse. I could hear sobbing in the background so it was obvious that everyone had heard or seen the news. I asked about Max's status and I was told that yes, they were told to hold open all operating rooms for possible casualties and there would be no blood supply for non-emergent patients.

I knew instinctively that we needed to get back to Max, so without our "ordered" rest or showers we got back in the car and headed to the hospital. Once there the surgeon came to Max's room to tell us that he had to go ahead with the surgery because the type of prep that had been done could not be repeated so he had gone to the hospital's board to ask for permission to perform the procedure, he was given a small supply of blood if it were to be needed.

The next thing we knew we were sitting in a very large surgical waiting room, a room meant to hold dozens of people and there the three of us sat alone, in complete silence. I kept telling myself that none of this was true, it was all just another one of the many bad dreams I had been having these last few months. Hours passed, three, four hours and we had no word at all from the OR, in a moment of sanity I realized that this was probably because there were no other surgeries being performed so the waiting room staff had been sent home. I found the phone that rings back to the OR, a nurse answered and told me she would call me right back with an update. I stood by that phone like an idiot for what seemed like forever when in fact the phone rang just moments later. She told me that Max was OK but the doctor had discovered rather serious issues with his intestines, they were barely a third of the length they should be and he couldn't be sure if they were or would ever function properly. For the second time that day I hung up a phone and collapsed into a sobbing heap.

It was at that precise moment I knew our lives would never, ever be the same. America would no longer have the same sense of tranquility and blind hope that no one could ever attack us. And my family would never have the same sense of peace and hope that Max would come out of all these many months unscathed. Both my country and my son were "broken" and in my complete sadness I was not sure either could ever be "fixed".

Ten years later, I am happy in God's blessings. He gave us back our son when everyone else told us to expect the worse, the unthinkable. He also gave all of us, as Americans, the ability to come together and to know that these horrible, black days made us nothing less than stronger. God, once again, "fixed" what was "broken".

Heaven and Hell All Wrapped Up into One Long Weekend!

2011-09-07T13:11:00.005-07:00

After a long, hot, tumultuous summer the Marangella's decided to "hit the road" for the Holiday weekend. For the first time in a very long time we did NOTHING, absolutely NOTHING and what a luxury it was! We laid on the beach all day and slept all night, it was sheer heaven.

Heaven came to a screeching halt however when we noticed that Max's left foot was bright red and swollen. He had fallen off the treadmill earlier in the week (the skinniest member of the family seems to be the only one who actually uses the contraption) which resulted in a nasty cut. Our first reaction was concern about whether or not the cut would clot due to his Coumadin dose, we are happy to report that it did clot but not before a nasty infection set in. Long story short we came home and went straight to the ER, it seems we just CAN'T stay away from the place!

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It's the Most Wonderful Time of the Year.....

2011-08-17T17:38:00.006-07:00

....just ask Michele and he'll tell you how wonderful it is to have peace and quiet again! Ask me and I'll tell you that I'm back to the bane of my existence, pulling kids out of bed every morning by their hair and spending my evening hours screaming over and over again, "If you don't go finish your homework right this minute I'll......(fill in the blank)".

This year I have promised myself that I will keep a very positive attitude (in fact I'm trying this new credo with all aspects of my life with varying results but we can hold that topic for a later post) about Max's school situation. I'm always nervous the first weeks of a new school year as everyone settles in, especially with teachers who have Max in class for the first time. I'm no dummy, he can be a handful and I worry about that. Obviously after the summer we have had this is particularly true this year as Max has so many restrictions and a new, special list of "dos and don'ts". I imagine that if I find the list overwhelming it must be even more so for new teachers and school nurses will feel about it.

Having said all of this I have a little secret…..so far I am really pleased with everything. Max’s new teacher and school nurse seem great, truly concerned about him and his well-being, and dedicated to making this a great year for him. Hey, maybe this positive attitude thing is working!

First day of Junior Year -- how did that happen?

Ellie's traditional first day of school pose with her dog.

Not so sure about the Fifth Grade.....

First to class, guaranteed to not happen again for the rest of the year....

We can only hope this is to be a prophecy!

Medical Update

2011-08-01T10:59:00.000-07:00

Yes, we’re still here. And, yes, I owe a very long overdue update but maybe no news is good news? (Written on Monday, July 25th …..)

OK, I have to admit that I started this post days ago but the phone started ringing and I found myself in the middle of another one of our “fire drills”. The first call was an extremely excited hematologist from Hopkins and the second was an equally excited cardiologist from Phoenix Children’s. The hysteria was based around the lab results for Max’s Coumadin level taken precisely 15 minutes earlier. It seems that his INR level (the number that indicates the blood’s clotting time) was critically high so the clinic immediately called both doctors. After talking to the doctors we realized that the types of numbers Max had were so high they were either a “false positive” (best case scenario) or a very possible bleeding risk (worst case scenario). At this point any fall, cut, or even scrap or bump could cause a life threatening bleed.

In typical fire drill fashion, Michele immediately flew out the door to have Max’s blood redrawn all the time praying that the results would indicate the best case scenario. But I think we all have a clear idea of how our luck runs, within a few minutes we knew it was not a false positive and all that remained to do was to decide if Max needed “reversal therapy” which would have meant a hospital admit or if we could just hold his Coumadin for a day or two and let things settle out on their own. Because Max showed no signs of bleeding, either externally or internally, and because we had since wrapped him in bubble wrap and duct taped him to the sofa in order to keep him still and safe (yes, I’m exaggerating no calls to Child Protective Services please), we were allowed to stay home, withhold the Coumadin for two days, and return on Saturday for a level check.

Saturday morning’s INR check revealed that Max’s blood levels were now just on the low side but no longer critical. Yet another fire drill comes to a safe and successful end. I left the hospital after the lab results came through and went directly to get my hair dyed, after the week we had I certainly must have sprouted an extra gray hair or two…..

Things have settled down again and the kids are getting ready to start school next week. We all feel like we’ve had no summer break whatsoever and the fact of the matter is we really didn’t. Between the month in Baltimore and the constant back and forth to doctor’s appointments, labs, and assorted other medical follies since we’ve been home there has been no down time for any of us.

The fun just never ends at the Marangella household……

Mr. Max Goes All - Star

2011-07-14T15:27:00.005-07:00

On Tuesday night, thanks to some very generous people, we had the extreme pleasure of attending the All - Star game here in Phoenix. I'm not sure who was more excited to go, Max or me, but I am certain that it will be a very special Mommy and Max memory for a long time to come.

So as promised here are some pics of Mr. Max at the game. Please be warned that because we did not have the official family photographer with us (Dad) these pictures were taken by amateurs (Max and me) with a crappy phone that neither of us knew how to work. In my case not only couldn't I work it but I couldn't see it either because I forgot my glasses at home!

Complete and utter satisfaction with his place in life, love it!

Batting Practice

All - Star Sunday

2011-07-12T08:46:00.004-07:00

Thanks to Wendy, our favorite Child Life Specialist (and friend), at Phoenix Children's Hospital Max got another wish granted, tickets to All-Star Sunday and the All-Star game! I think these pictures give a great idea of just how thrilled Max is with the whole experience. Stay tuned for more pictures from tonight's game!

Trademark ear-to-ear smile

Sporting his special jersey, a gift from D-Backs player Willie Bloomquist

In the spirit of good game manship, Max poses with a few rival mascots

How we spent our holiday weekend....

2011-07-05T14:48:00.005-07:00

....we did absolutely NOTHING! Perhaps it was the 118 degree weather or perhaps it was just the need to do nothing after 30 days of doing "something", either way it was neither glamorous or exciting. The only "big event" of the weekend was Max's long awaited return to his pool. Nearly six weeks after school let out, summer has finally begun at the Marangella house!

Tuesday afternoon postscript:

Evidently doing "nothing" is less than appealing to Max so early this morning he decided to go with the ever exciting nosebleed. Now it's not that Michele and I don't like a good fire drill but a dawn nosebleed on a kid tanked up on coumadin has an extra special sense of hysteria attached to it. As of now all seems OK and I would like to take this opportunity to thank Max for waiting until after midnight to instigate a trip to the hospital. Thanks Max, my offcial "out-of-the-hospital on the 4th of July" stats have improved to 3 for 10!

Ranting and Raving

2011-06-29T15:30:00.003-07:00

In fairness to everyone I am going to put a "caution label" on this post, both for length and content. In short, the following is a letter I wrote this morning to Max's Nurse Case Manager at his Medicaid Plan regarding Max's post-op care in Phoenix.

It took me many tries and a lot of editing to get this letter to a place that was not full of rage and accusations. It was by no means a letter that was easily written but it was a letter that NEEDED to be written. We are extremely fortunate to be able to take Max to a place like Hopkins for medical care, not all families are that blessed and it is important that the State of Arizona recognize that the pediatric health care system in this State is broken and children are paying the price.

I have eliminated names to protect both the innocent as well as the guilty and I ask all of you to accept this as my attempt to state what is so clearly obvious to many of us who parent chronically ill children.....plus it was also GREAT therapy for me!

Good Morning P –

I am writing this to you because of deep concerns we have regarding Max’s post-op care here in Phoenix.

As you know Max is just over three weeks post –op for his aortic valve replacement at Hopkins. We returned just this weekend due to a protracted and rocky recovery. Before discharging us Hopkins reviewed several conditions for discharge home with us, they are as follows:

1. We had to have a cardiology appointment no later than Monday or Tuesday of this week. These follow ups should continue as frequently as weekly if need be due to the number of post-op issues Max experienced. This should include a rather vigorous echo schedule due to marked (measured as moderately diminished function by echo twice at Hopkins) post-op heart failure.
2. Coumadin checks would have to be handled on a minimum of an every other day basis as Max was diagnosed with HIT (heparin-induced thrombocytopenia) and therefore could not get out of range due to the fact that heparin or lovenox would not be a “rescue” option for Max.

These conditions made logical sense to us as parents and we agreed to follow up with our cardiologist here in Phoenix. In the meantime, Hopkins Cardiology and Hematology contacted their counterparts here (I had given them Dr. P’s name as that was who Dr. N suggested during our visit with him pre-op), all paperwork was faxed at least once to the office here, including a very detailed coumadin protocol devised especially for Max by his hematologist at Hopkins.

Upon our return to Phoenix we needed to have an INR check on Sunday so Hopkins called the PCH ER to arrange this, this option was chosen because as it was a Sunday there would be few options for a blood draw at any other facility. Obviously an ER visit was not optimum (and certainly not cost-efficient) but it was the only option. It should be noted that Max’s INR was 3.0 on Sunday, just at the high end of the suggested 2.0 to 3.0 range. The PCH ER Attending called Hopkins with this info and arrangements were made regarding dosing by them. When I spoke with Hopkins on Sunday they confirmed with me that PCH Cardiology would be running another INR on Tuesday during our appointment, they once again reminded me of the importance of keeping on top of this.

Therefore, on Tuesday we went to PCH for our appointment with Dr. R as Dr. P would be out of the office this week. Before I review this appointment and our concerns with Max’s care during this appointment I really, really want to stress that I went to this appointment full of optimism that we would have a good source of care for Max in Phoenix. This optimism, unfortunately was quickly dashed as we waited for nearly 50 minutes for the doctor to come into the exam room. We understand just how overworked doctors can be so although this wait was not great, especially for a ten year old little boy, we assumed that once Dr. R came into the room we would receive an acceptable amount of his time reviewing Max and his treatment. This was decidedly not the case; Dr. R came in, listened to Max’s heart commented on the “tick” of the valve and suggested that an echo and coumadin check could be done in a month. When I questioned the safety of this and explained what Hopkins requested I was told that their protocol seemed “excessive” (direct quote), I pushed for a script for an INR and when asked I was told not to do it at the Hospital because a Sonora Quest draw would be quicker. I let Dr. R know that Hopkins was waiting for an INR number and asked him to call both myself and Hopkins later in the day with Max’s number. Dr. R left the room and said he would be back shortly with the script, he did not return but rather sent his assistant in with the script. In total our appointment with the doctor lasted under a minute and consisted of nothing other than an EKG and a quick listen to Max’s heart. In short, I feel that this was not a thorough post-op appointment on any level and the suggestion that coumadin checks could be done on a monthly basis for a highly complex child who had barely been in consistent therapeutic range for a short number of days was medically negligent at best.

When my husband took Max to Sonora Quest shortly after the appointment he was told that Dr. R would not have any results for at least another 36 hours. Obviously this would be outside of the protocol that we were given asking for a number and correlated dosage change if necessary yesterday. As a concerned mother I call Max’s hematologist at Hopkins to ask him how comfortable they felt with this wait, I was told that it would not be acceptable to wait for this mainly for the reasons I have outlined above. Arrangements were quickly made via telephone between Hopkins and Mercy Gilbert Hospital’s ER to do a stat draw. Again not optimal but at that point everyone’s hands were tied. We are incredibly thankful that we did this because Max was under therapeutic range at 1.9 and needed a supplemental dose of coumadin. Please note that all of this was taking place at midnight East Coast time but that did not deter the Hopkins doctor from researching on-line phone numbers he could use to try to reach Sonora Quest to see if they could give him a verbal result, Hopkins is also continuing to research a feasible long term option for Max here in Phoenix. Baltimore is doing this from 2500m miles away.

This morning I called Dr. N’s office and spoke to his assistant E. I explained what had transpired and asked if Dr. N could work with Hopkins on the coumadin levels. E asked me who we had seen yesterday and told me that she would contact Dr. N to see if he wanted to see us or would just give me a call. Either way she would get back to me in an hour or so. A short time later Dr. R called me back, obviously prompted by my conversation with E, he clearly stated that he was unsure of why I did what I did last evening and why Hopkins was using such a stringent protocol for Max because he did not agree with it. I politely told him that this was my son and I much preferred “stringent” and safe as opposed to any other option. This is indeed the life of a child. He felt that two draws yesterday was not “great”, I agreed with him that it wasn’t but sometimes “not great” is necessary. He emphatically reiterated to me that with the type of valve (On-X) Max was given in an aortic position he would not follow this protocol but that he would look into a home monitor as I requested yesterday and at finding out if Mercy Gilbert’s Coumadin Clinic would be a good option for Max going forward, the later of these two was mostly because I told him Hopkins was doing so and I feel he didn’t want to look as if he wasn’t trying.

Coincidentally as I am typing this to you Dr. R called me back to tell me that Mercy Gilbert’s outpatient lab has a two hour turnaround time and would therefore be the better option. He also told me that he had spoken to Dr. H at Hopkins who used the same protocol they did here in Phoenix, twice weekly checks. I find this strange because just yesterday Dr. R told us monthly checks were fine – how did he go from monthly to twice weekly draws as his protocol? I told him that, yes, we were told that we could go down in the number/frequency of INR checks once everyone was very comfortable that Max was consistently in range, as a result I suggested that we (he and I) were going to have to accept that we disagreed in how Max’s management was best served. He asked me who I wanted to have follow Max’s level and I told him I felt at this time Hopkins would be best suited to follow-up, especially because they are happy to do so. I did not exclude that this could change once everyone is convinced we are safely in range. I am not in any way looking to exclude the doctors here in Phoenix from Max’s care, obviously we need local doctors on “Max’s Team”, he asked who I would follow up with here as Max’s cardiologist. I told him that I would be using Dr. P and he said he would pass on the information he had to him.

Please forgive the lengthiness of my e-mail and know that I am no way trying to “cause problems”, I truly looked forward to forging a good working relationship with the doctors here in Phoenix. I desperately needed “peace of mind” that my son would have great local care. At the same time I feel that it is incidents such as these that have driven us to seek care for Max out of state at Johns Hopkins. I know that many people have been critical of us for this but we are merely acting as concerned and responsible parents, I can’t imagine any parent not doing this for their child.

Thanking you in advance for taking the time to read this.

Patricia

Welcome Home Max!

2011-06-27T17:34:00.004-07:00

We're home and although we are all still groggy and adjusting to the time difference and the thermometer on our patio is reading 115 degrees there truly is NO PLACE like home! Max is completely back in his element enjoying another phase of "post surgery attention". During a quick Costco run yesterday Max's "Costco Gang" presented him with a cake to celebrate his triumphant return, he was so happy to see everyone and show them his scar. Not sure how many folks were really that interested in seeing it but they were flashed all the same......

We are settling in and trying to get used to our new "normal". This means trying to convince Max that his incision is still too fresh to play baseball, swim, or otherwise run around like a maniac. Of course high levels of blood thinners are also not conducive to jumping off the furniture but we're having a hard time convincing Max of this. While part of me wants to wrap him up in bubble wrap and duct tape him to the sofa I have to admit I love seeing a bit of the old Max start to peak through.

We are also busy trying to fine tune the new medicine schedule, if we thought Max was on a ton of meds before the list has only grown exponentially (I wish I had thought to bring home one of the nurses with me, I hate dosing meds!). This week we'll also have a doctor's appointment or two and certainly the dreaded coumadin level checks so check back for updates!

Hopkins Wrap Up

2011-06-24T20:36:00.002-07:00

As I sit here looking around our room, suitcases piled high, Max sleeping next to me, it finally feels real....the roller coaster has slowed to a stop and the terrifying ride is over....at least for now. And at the moment "now" is all that matters.

Max's blood work this morning looked great. Because he's had a few consecutive days of being in "range" with his coumadin they are giving us tomorrow off, which means we don't need to go to Hopkins' ER (only the ER draws blood on Saturdays) in the morning for another draw. However it is still too early in Max's therapy to go more than one day without checking his levels so bright and early Sunday morning you can find us at Phoenix Children's ER having a check. Max's doctor here has already called PCH with the order so as long as nothing gets screwed up on the AZ end we shouldn't have to spend too much of our first day home in a hospital. But who really cares? At least we'll be home!

Before I go back to packing (or at least watching Michele pack) I want to thank everyone who sent messages, cards and presents, and even visited Max. It meant so much to him, and us, to know that everyone at home was thinking of him and praying for him to get well.

I guess there's just one thing left to say......Arizona here we come!

Hopkins - Post-Op Day Sixteen.....And We're Outta Here!

2011-06-23T19:33:00.008-07:00

Sweet Sixteen. It took nearly three weeks but we've finally managed to get ourselves discharged!

We had been told yesterday that we were on the "likely to be discharged" list (one of the residents even showed me the list) but our superstitions NEVER allow us to utter the "H" word (home) before we're actually outside the four walls of the hospital. As any parent of a chronically ill kiddo will tell you the mere mention of the "H" word automatically buys you more hospital time.

As of this morning the doctors felt that Max was stable enough both with his coumadin levels and fever/infection status that there was no reason not to discharge us with returns to the outpatient clinic both tomorrow and Saturday morning. We will fly home Saturday evening and will perhaps need to have blood levels drawn at our local ER on Sunday and Monday before we see our AZ cardiologist on Tuesday. But who cares? We're going "H" (still can 't say the word until I'm unlocking my front door)!!!

We want to thank everyone who has prayed so hard with us these last few weeks for Max's successful surgery and full recovery. We firmly believe that these prayers guided all of Max's care, from the surgeon's hands to the ICU doctors and nurses and everyone else who cared for Max. Miracles do not come lightly and they certainly do not come without prayer. Thank you everyone from the bottom of our hearts, today we brought our baby "H"!!!

Today's pics:

Max on "Clown" TV

Spiffy Hat

Finally! Making a break for it!

Outside the double doors, first dose of fresh air in nearly three weeks!

Leaving open-heart surgery #4 behind.

Max arriving at our Baltimore timeshare. Doesn't everyone walk the streets in their brand new Monster Truck PJs?

Welcome home Max!

Hopkins - Post-Op Day Fifteen

2011-06-22T20:03:00.002-07:00

Another day of sitting around and waiting. Doctors come in, doctors go out, in, out, in, out and another day passes. We're pretty much in a holding pattern waiting to see what Max's fevers will do, figuring out if there's an infection worth treating or not, and of course, getting his coumadin at a stable "therapeutic range". It always seems like it's the "little things" at the end that take up the most time, probably because at this point everything seems too long.

And while the time crawls and home seems painfully far away we know that there are many excellent doctors and speciality services all working diligently to make sure that Max and his shiny new valve are safe and healthy. I simply CANNOT imagine being anywhere other than Hopkins. Everyone takes such care with Max and they listen to us and our questions and it is a true dialogue, together as a team we are making decisions and mapping Max's plan of care for the next few months. Physicians that listen to and learn from parents....believe me, you DON'T see that very often at all!

Today's Pics:

Hospital BINGO!!!

Did he really just win University of Maryland boxers?

Hopkins - Post-Op Day Fourteen

2011-06-21T16:49:00.007-07:00

Two weeks ago today almost to the hour Max was whisked past us going from the OR to the PICU. Since then so much has happened, the days are blurs, our minds are foggy. But today as I watched Max whip around the 4th floor going in and out of the playroom, even going down to the cafeteria with Ellie I almost forgot the nightmarish post-op week and a half in the PICU. The ventilator, the diminished heart function, the fevers, it all seems so long ago even if in reality it was just last week. As Max's physical pain has eased so too has our intense emotional pain, we never really forget any of it but God has blessed us with the ability to reflect on the good that has come from all of this and not dwell on what went wrong.

Today's pics:

A gift from Gabby

A rare occasion caught on film!

Hopkins - Post-Op Day Thirteen

2011-06-20T19:30:00.005-07:00

Today was pretty much just a sit and wait day. Sit and wait for the doctors. Sit and wait for lab work, x-rays, and echo cardiograms. Sit and wait for answers.

Today's answers were varied. The best answer we received, hands down, was the results of Max's echo which showed that his heart function had returned to "good". Just days ago we were told that it was moderately diminished and it would take pretty aggressive therapy and time to return if it returned at all. There were no guarantees. And today we received another "Max Miracle", proof that doctors are human and diagnoses are often just their best guesses.

The results of Max's cultures are starting to trickle in and it seems like he may have a fungal UTI. Not a great answer but at least it may explain the fevers. The only problem now is that any of the drugs in the anti-fungal family would interact with his coumadin levels so they've taken a second culture to be sure what and if we need to treat. Just some more waiting, unfortunately we're getting good at it.

Today's pic, Max doing his Physical Therapy.....the Wii!!

Hopkins - Post-Op Day Twelve

2011-06-19T18:11:00.004-07:00

Today we are officially in the hospital longer than we were for Max's surgery in 2007 and we thought that stay went on forever......

The hot topic (no pun intended) of the day wasn't really the fevers anymore, that fire drill seems to have past. Today's issue centers around Max's lab results which indicate that his coumadin (blood thinner) levels are extremely high -- obviously this puts him at an increased bleeding risk so caution has been the order of the day.

Yesterday we had a great visit from some AZ friends who are vacationing in the area, it was so nice to see some familiar faces. Bob and Terri we can't tell you how much your visit meant to all of us!

A visit from home - Max and his football buddy Chris

Tonight's prayers: please pray that Max will have no bleeding issues whatsoever, that his blood work will show no sign of infection, and that the fevers will subside.

Stay tuned.....

Hopkins - Post-Op Day Eleven

2011-06-18T20:01:00.003-07:00

I have officially jinxed us. Max has a fever (which he has had on and off since surgery) and the floor doctors don't feel comfortable about not aggressively looking for a source. Because of his high heart rate, low blood pressure, and impressively high white blood cell count they are culturing both blood and urine and while I appreciate their thoroughness and understand its importance, especially in light of the fact that Max just had an artificial part put in his heart, it is difficult to not be frustrated. All we want to do is go home and this won't help our case.

It's been a rough day all around for us but not as much as it has been for Max. Once he left the PICU his central line (sort of a "super IV") had to be removed which means all his many labs have to be drawn each time. That's a lot of needle sticks and if you throw in the twice a day shots he now needs it has become just too much for this little boy. He is tired and cranky and wants nothing more to do with this whole situation. Who can really blame him? As hard as this whole thing has been for us it is nothing compared to what Max has had to endure and it is heart breaking to watch him sit silently in his bed and cry quiet tears as someone sticks, pokes or prods him.

So tonight please pray for Max. Pray that all of his tests will come back negative for any type of infection, that the fevers will subside, and that his heart rate and blood pressure numbers will even out.

And now a few pics from Max's day:

Walking the Halls

Ready for Bed

Where are we?

2011-06-18T04:54:00.003-07:00

I've had a few requests from folks asking for the address of our Baltimore "timeshare". So here goes:

Children's House at Johns Hopkins
ATTN: Max Marangella, Room 204
1915 McElderry St
Baltimore, Md 21205

Have a great Saturday!

Hopkins - Post-Op Day Ten

2011-06-17T20:41:00.003-07:00

Ladies and gentlemen I am happy to report that the Marangella's have been kicked out of the PICU....and it wasn't my fault! Last night the attending doc came in to tell me that Max was officially "the least sick" child in the ICU and they needed his bed. The least sick? Less than 48 hours ago he was definitely in the top five!

This morning they packed us up and shoved us towards the elevators to send us down to the fourth floor. Private rooms, SCORE! Michele insists he heard the nurses cheering as the door swung close behind me. I decided not to take it personally until we got to the "floor" and our night nurse immediately remembered me as the mom who gave a resident hell during her very first week of residency for being insensitive and refusing to take what we as parents were telling her into consideration. Evidently this episode is a classic and recounted over and over again amongst the nurses. I'd like to think I taught this resident something because four years later she's Chief Resident at Hopkins, the number one hospital in America.

As for Mr. Max, he is doing so well that I don't want to jinx ourselves too much but I cannot believe how well he's hopping in and out of bed and chasing down the hallways now that he is no longer tethered to an IV pole. The physical therapist admitted that we might not need her after all! Now all we have to do is get Max's blood thinner values into "therapeutic range" and we might just be able to see the light at the end of the tunnel.

Stay tuned....

Hopkins - Post-Op Day Nine

2011-06-16T17:33:00.003-07:00

Today was a day of firsts: first hallway walk, first sitting up in a chair, and first SUBWAY Spicy Italian sub! It is so hard to believe that just 48 hours ago Max was so sick that the doctors really didn't know how to safely extubate him. Looking at him today I almost forgot that earlier in the week his heart and lungs were both not functioning properly. Max never ceases to amaze me, he can go from super sick to his typical goofy self in a matter of hours. It is nothing less than a miracle and we are so truly blessed and thankful!

Because Max has spent nine solid days in bed they had him start working with a physical therapist today as well as with the Pain Management Team so that he can be safely weaned from all the narcotics they have been snowing him with. I now know how Lindsey Lohan's mother must feel, my ten year old is a candidate for drug rehab!

Praying that each day Max gets stronger and closer to the door. We all want nothing more than to be home!

Stay tuned.....

Hopkins - Post-Op Day Eight

2011-06-15T23:00:00.006-07:00

Max is holding his own! He continues to breathe well with the tube out and bi-pap on! It truly feels like a miracle, we must admit that we were fearing for the worst only because we have seen so much pain and suffering around us in the close quarters that is the PICU at Hopkins. Sleep deprivation is a horrible, horrible thing and it allows the mind to wander to places it should not go.

Last night as the night nurses came on many of them ran up and hugged and kissed Max as they were genuinely thrilled to see his breathing tube out (for those of you who have asked, yes there is still a nurse or two who will speak to me). During evening rounds tonight the doctor that I love so much was super excited to play the hero and allow Max to start drinking ginger ale, it is the first thing that has passed his lips since last week Monday. The look of sheer delight on his face behind his mask was priceless! There is hope that if he continues to do well he might be able to eat tomorrow. This is a very, very good thing because Max begged me for a bowl of cereal tonight -- he must be desperate because he HATES cereal!

None of today's successes guarantees that we are completely out of the woods. We still have to see if Max's heart will regain some of the function it lost due to surgery and the doctors have to find Max's "sweet spot" with blood thinners -- enough to not form clots but not have bleeding issues. Please pray that these things happen safely for Max.

Stay tuned.....

Hopkins - Post-Op Day Seven

2011-06-14T13:24:00.005-07:00

Today marks one week since Max's surgery. Many things have gone right, many have gone wrong. After seven days we should no longer be in the PICU but rather "out on the floor" in a regular room. But Max has always followed his own plan and this is no exception. Today his plan included getting his breathing tube out!!

This morning the Attending doctor came to Max's bed very early, before rounds, to tell me that the AM x-ray looked very good. To quote her, "This is as good as it gets." Their plan was to extubate right after rounds early this morning. Their plan, not Max's. Shortly after the doctor's visit Max had had enough and attempted once again to push the tube out on his own with his tongue. This sent him off into a mini panic attack but not quite as bad as yesterday's. Because there were several other PICU emergencies (in the last 24 hours there have been several very sick children, please pray for them and their families) none of the doctors were able to get to Max's bed to get the tube out and thus the nurses had to sedate him again. Obviously a sedated child cannot be extubated so we were back to waiting. This last week there has been too much waiting especially for some very impatient parents but in the end I guess good things really do come to those who wait.

Once Max started to wake up this afternoon I walked the halls and rounded up the doctors myself, I have not felt the nurses' love for this lack of respect for the PICU rules and pecking order but this isn't a Miss Congeniality contest and I wasn't looking to make friends but rather do what's best for my son. Parenting a chronically ill child is tough work and sometimes being tough is the only way to get the job done. And done it is! The tube is out! Max and many, many prayers have done it! The tube is gone and we are now on bi-pap again until our next x-ray at about 8 or 9 o'clock, that x-ray will show us were Max is breathing on his own. Please, please pray for success, psychologically Max needs this success in order to make his plan work.

Stay tuned.....

Hopkins - Post-Op Day Six

2011-06-13T11:18:00.003-07:00

Needing prayers.....

Max had another panic attack much as he did yesterday morning. He is completely fed up with the breathing tube and he tries to push it out with his tongue choking himself and then he panics. It was extremely scary to see.

As a result of the attack he is again very sedated, an x-ray will be done shortly to see if the coughing/choking fit actually opened his lungs. Perhaps a positive from a negative?

He also had some bluing of his hands towards the end of the attack so cardiology has ordered an echo cardiogram to be certain that there isn't anything else going on.

Please pray for Max, that his lungs will open and that his heart is fine. We need to get off this roller coaster!

Hopkins - Post-Op Day Five

2011-06-12T12:41:00.008-07:00

Today has been a typical Sunday in a hospital....nothing happens!

They have decided not to do a lavage because this morning's x-ray looked much better, in fact there was talk of extubating Max later today. We're not sure if we believe this or not as no one is presently doing anything to meet that goal (again typical Sunday in a hospital). I really like tonight's attending so we're waiting to talk to her.

Speaking of liking caregivers, today has been a challenge. Michele and I changed shifts at about 7 AM when I went home to sleep. Not much later he started to text and call me that Max was having a rough time based mostly on today's nurse who seemed to be less than gentle with him sending his heart rate and blood pressure soaring. Very little of a "plan of action" is being shared with us today, hence my waiting for the night shift.

I'll update later if anything does happen....stay tuned......

Hopkins - Post-Op Day Four

2011-06-11T18:28:00.007-07:00

The theme for today was "status quo"....sort of. Max looks great and seems very comfortable although still very sleepy. We have asked them to back down a bit on the pain medication to see if that helps with the grogginess.

Although Max looks so good his chest x-rays tell another story, his left lung is collapsing again. Each of the three or so x-rays taken in the last 24 hours show that although better than where he was yesterday, Max is progressing in the wrong direction. Unless tonight and/or tomorrow morning's films look better they will have to do another bronchoalveolar lavage. Once that's done we will have to wait at least another 24 hours to see if the lung remains inflated. If not there's another less than fabulous theory as to why Max's lung cannot remain open on its own. After speaking with the cardiac surgeon this evening he explained that it is not unusual for patients having repeat cardiac surgeries to have issues with their diaphragms. This is mostly due to the amount of scar tissue produced by the body each time the chest is opened and closed for surgery. It is possible that while they were carefully working through this tissue on Tuesday either a small nerve or the diaphragm itself was nicked. If this is the case it will mean a second surgery to alleviate this problem. As I said, less than fabulous.....

Tonight's prayers are for Max's left lung to open and remain open on its own or at least after a second lavage and therefore a second surgery will not be necessary. Stay tuned....

Hopkins - Post-Op Day Three - 2

2011-06-10T19:43:00.002-07:00

Today's bronchoalveolar lavage was a HUGE success! Trying not to offend anyone's sensibilities but they got some super-sized boogers out of Max's left lungs. I have NEVER been so happy to see mucous in my entire life!

By the afternoon Max's chest x-ray showed incredible improvement, much of the collapsed lung was clear. Obviously Max hates the tube but once he woke up from the massive drugs they gave him for the procedure he looked much, much more like his old self! Example below:

Mr. Max makes a return!

Keep praying and stay tuned......

Hopkins - Post-Op Day Three - 1

2011-06-10T07:05:00.003-07:00

The roller coaster has gone completely off track. Overnight Max's ability to breathe, even on bi pap, became increasingly difficult if not impossible. He was taken off bi pap and reintubated, he is once again on the ventilator.

The working theory is that after much suctioning a mucous plug must have lodged somewhere causing the left lung to completely collapse. Pulmonolgy has been called and at some point today they will do a bronchoalveolar lavage (literally they will internally "wash" his lungs) at the bedside. The hope is that this procedure will remove copious quantities of mucous allowing the lung to reinflate.

There are a number of other things going on but right now the lungs are obviously the number one priority. We're asking everyone to pray for Max and the healing of his lungs because without this he will not be able to recover overall.

I will try to update later, hopefully with better news. Pray and stay tuned......

Hopkins - Post-Op Day Two

2011-06-09T19:09:00.002-07:00

It's been a long day, a very long day. The roller coaster ride continues.

This morning other than being extremely groggy it seemed that Max's respiratory issues were on the mend so at around noon Michele and I left Max with my aunt to go home to sleep and shower. It seemed we barely shut our eyes when my aunt called to say that Max was back in trouble and they were switching him to another type of ventilator. In a little more than an hour we went from almost completely weaned off of oxygen to bi pap at full force.

We did lose a few lines and tubes but we also regained some of them. The classic one step forward two steps back dance. One of the doctors tried to reassure me telling me that I'm an old pro at this and I know that these things can happen. I responded that she was right but I am now ten years older and I just don't have this in me anymore.

So here we sit, Max has spent most of the day asleep or in pain or both. We're praying fiercely for an uneventful night, Max is worn out and scared and he needs a chance to rest and catch up.

Stay tuned.....

Hopkins - Post-Op Day One

2011-06-08T14:10:00.003-07:00

The roller coaster ride has officially begun, this ride is far too familiar and not much fun.

In a nutshell Max had a pretty OK night which in the big picture is not bad after open heart surgery. Most of his numbers, i.e., lab work, vital signs, etc. looked good. There were a few things that needed "tweaking" but there always is. Max spent most of the night decidedly NOT knocked out as he should have been. No matter how much pain medication they threw at him he continued to fight the breathing tube. He and I spent a good part of the night playing a game of charades as he tried desperately to talk to me over the tube. As many of you can guess the two words he mostly mouthed to me were "hungry" and "water". Classic Max.

By the time they decided to take him off the ventilator early this morning the drugs decided to kick in and he was just too sleepy to breathe on his own. However, when his surgeon came in mid-morning Max was ready to go and out came the tube.

Here's where the ride begins. Once the tube came out Max was doing well enough for me to leave Michele in charge for a bit while I ran home to take a shower.....very short lived. Max has a pretty regular routine after being extubated and he decided to follow that routine once again. His left lung is now almost completely collapsed and he is needing a decent amount of support to keep his respiratory numbers more or less where they should be. As you can imagine he looks miserable and now needs pain medication. Of course there is a very intricate dance that takes place when mixing narcotics, poor breathing and a need to "cough things up". We need to give Max enough to make him comfortable and willing to cough but not so much as to suppress his breathing.

All of this is part of the "ride". The good news is that everyone is working as a team and we are still very hopeful that we can move past "stable" and get back to "improving". After all, Max and I need to get out of the PICU and to our private room quickly. Neither of us share space well!

So today's prayers are for better breathing, re-inflation of his left lung, and to hold off the low grade temp he seems to be running.

Thanking everyone for following us and continuing to pray....stay tuned.....

Surgical Update - 7 in the PICU (10:45 PM)

2011-06-07T19:45:00.003-07:00

Max is now in the PICU, his blood work and vital signs are all pretty much where they want them to be. At this point the things to watch are: keeping his blood pressure low, slowing the bleeding, and keeping his pain in check. Unfortunately Max "knows" their drugs and has a high level of tolerance, in fact at this point they've stopped administering the pain meds "as needed" and changed over to a constant drip. The joke has become that Max will win all the drinking games in college because it takes A LOT to "intoxicate" him.

Tonight we're praying for his vitals, lab work, and drainage tubes to all remain in normal parameters and that he can rest comfortably which will all lend itself to him getting off the ventilator tomorrow. In the cardiac surgery world every tube, every line, every everything they remove from your body puts you one step closer to the door.

I will update tomorrow....stay tuned.....

Surgical Update - 6 (7:00 PM)

2011-06-07T16:03:00.002-07:00

We just spoke to the surgeon. There is good news, bad news. The good news is they have closed up and they should be wheeling him by momentarily.

The bad news is that there was a second aortic aneurysm that needed to be grafted, so he now has a graft connected to a graft connected to a mechanical valve. The bionic man in the making. What worries us here is that with Max's "unknown" syndrome we just don't know if these aneurysms will continue to need surgical attention. No one can predict just how much of an aorta can be grafted.

The other concern is that they did have to cool the body to the point where his brain was not being perfused, we had hoped to skip this part because it is always a risk.

All in all things seem to have gone well, the surgeon is happy and therefore so are we!

Stay tuned......

Surgical Update - 5 (6:15 PM)

2011-06-07T15:19:00.003-07:00

Max is now off bypass now but is bleeding slightly so they cannot close his chest yet. They are replacing whatever blood is being lost and they are still hopeful that they can be done by 7:30.

Surgical Update - 4 (5:40 PM)

2011-06-07T14:40:00.002-07:00

The valve replacement is complete, a small piece of Max's aorta also needed to be repaired as well. His vital signs all remain good and they do not expect there to be much if any bleeding (fingers crossed). The nurse also mentioned that the amount of scar tissue looked good, because Max is a "repeat offender" in the open heart surgery arena they would have expected to see greater scaring.

They are now warming Max's body so that they can take him off of the bypass machine. Now we need to pray for good heart function and no bleeding. Hopefully he'll be completely off the machine in a half hour or so and if all goes well we might be done in about two hours.

Keep praying!

Surgical Update - 3 (3:20 PM)

2011-06-07T13:06:00.001-07:00

Heart rate and blood pressure good. Bypass started.

Surgical Update - 2 (2:20 PM)

2011-06-07T11:21:00.001-07:00

Surgery has started, Max is doing well.

Surgical Update - 1

2011-06-07T10:35:00.004-07:00

About an hour ago we left Max in the OR. As I held the mask over his mouth he began to cry, if I could have I would have picked him up then and there and bolted from the room. Obviously not an option.

After talking with the doctors we have been told to expect an eight to nine hour procedure. We will be updated every two hours or so, as we have news I will post it here.

Max preparing for another "game of his life".

Max and his favorite pre-op nurse.

Hopkins - Day Seven

2011-06-06T11:11:00.004-07:00

Specific prayer requests for tomorrow:

That Max will not be overly anxious or scared. That he will feel as little pain as possible.

That his surgeon, doctors, and nurses will be guided by compassion. That their incredible medical talent and knowledge will be an instrument for another “Max Miracle”.

A successful, safe procedure with minimal bleeding and other complications.

Minimal time on heart bypass.

No long term need for the ventilator or sedation which can often lead to their own complications.

And finally please pray for us, eight hours is a long time in a waiting room when you’ve left your son in someone else’s hands…..no matter how wonderful they are at what they do.

I will be updating fairly frequently tomorrow as we get news from the OR so pray there’s only good news to report.

Stay tuned…..

And now a break from our regular programming ......

2011-06-05T09:08:00.009-07:00

I just had to share this video clip.

Hopkins - Day Five - The Calm Before the Storm

2011-06-04T07:18:00.008-07:00

Finally!! Max at the Air and Space Museum.

If only the whole trip could be like this...... Monkeying around at the Baltimore Zoo.

Hopkins - Day Four

2011-06-03T18:38:00.002-07:00

Today was decidedly NOT a good day.

It just started bad and incremented itself into one of those days you wish you could have skipped altogether. There were several things I would categorize as not great news but there were two things in particular that can be categorized as plan old crappy.

First, as a mother I stink....I spent much of this week berating Max for having "made up" his neck pain during our first pre-op appointment. Today we were told that his x-rays from yesterday show a deterioration in his cervical spine, although not uncommon in children with connective tissue disorders it is something we'll need to watch (cause we don't have enough things to watch). It's also something I should not have made lightly of, but who knew? Max never complains that anything hurts so I assumed he was just giving the doctors a hard time.

Second, surgery has been postponed....twice. During our cardiology appointment we were told that a rather sick baby was born last night and needed immediate surgery, obviously this pushed the whole schedule out a day. By the time we saw the surgeon shortly thereafter we had been moved from Tuesday morning to Tuesday afternoon, another sick newborn. This is a good news, bad news situation. The good news is that Max will be the only afternoon case so he will have everyone's FULL attention....definitely good news. Must be an "Italian" thing but this surgeon from Rome seems particularly attentive to Max. More good news. The bad news however, is really bad news. If Max doesn't have surgery until noon we are going to have to keep him away from food for half a day, for everyone who knows Max you can appreciate how painful this will be for all involved.

Stay tuned.....

Hopkins - Day Two

2011-06-01T13:57:00.002-07:00

Today was a good day. A very good day.

This afternoon we had our very first appointment with the Hematology clinic here at Hopkins and what was meant to be a run-of-the mill pre-op appointment turned out to be so much more. Max has always had chronic issues with low platelets (the blood cells that cause us to clot when we bleed), obviously a low clotting factor is not a great combination with major surgery. Because of this we assumed that these doctors would probably recommend the obvious, transfuse Max during surgery. But we got so much more! The first doctor in the room was actually a PhD with a background in stem cell research who just so happened to also be a MD (no idiot this guy). He took a lot of time explaining to us that they recently studied and figured out how Max's connective tissue mutation fits in with his low platelet counts. They now understand the entire cell process and will be able to help the surgeons and cardiologists care for Max long term so that they can give him optimum care regarding the necessary blood thinners post valve placement. In other words, the thing that had me the most worried, long term use of blood thinners in an active ten year old boy is no longer quite as scary. I love Hopkins and all their geniuses who are so interested in taking care of and studying Max!! Sometimes it rocks being the only know medical case of something -- doctors find you exciting and trip over each other to be part of your "team".

On Friday morning they will run some very specialized blood work on Max -- in fact this is the only lab in the U.S. (and perhaps the world) that can run these tests and it seems the head of the lab is salivating waiting to "play" with Max's blood!

It never ceases to amaze me how much all these doctors know about Max before we even step foot in their exam rooms. Every time I start to give them his history they stop me to let me know that they've already read everything and have even started their own research. After years and years of hearing, "Oh that's just Max." from so many so called "physicians" who didn't know what else to tell us it seems unreal when these doctors have figured out so much in so little time. They told us they feel as if they are close to having options which will correct Max's platelet issues long term. Have I mention I LOVE HOPKINS? We are so blessed to have found this place were so many are using their God given talents to perform miracles everyday!

It truly was a good day!

Hopkins - Day One

2011-05-31T20:56:00.003-07:00

Our mini-vacay in DC is over and although it was great it was way too short! Today was the start of the "real fun" a.k.a. pre-op appointments and testing. Max's first appointment was with anesthesiology, during the consult Max decided to be goofy and when they asked him if his neck ever hurts he quickly responded, "Oh sure lately it hurts a lot." What the heck? Obviously Max was just clowning around but the doctors took it seriously and now we have to see the orthopedist too. I swear if his neck didn't hurt before it will now when I break it!

We also did Max's eight week post-surgery check-up for his eyes and much as we suspected the surgery was not a complete success. It did correct some of the problems but it was so late in the game (i.e., the issues should have been addressed years ago but we couldn't convince the doctor in Phoenix to do anything) that going any further would have caused Max to have double vision when looking at things close up. We discussed using the eye drops again and the doctor thought it would be a reasonable way to see if that doesn't bring Max's eyes closer in.

Our appointments continue tomorrow and we've warned Max that if he invents any other new "symptoms" when the doctors ask him questions we will be happy to abandon him on the nearest inner-city street corner. I'd like to think that this would scare him straight but we all know Max will do anything for a laugh!

Stay tuned.....

The Adventure Begins

2011-05-27T22:15:00.004-07:00

Tonight as we finish packing up suitcases and counting out the dozen different medicines that Max will need these next few weeks I feel my anxiety growing. Anxiety that I will forget something, anxiety that logistically something will go wrong, anxiety, anxiety, anxiety! And even as I feel the churning in the pit of my stomach I know that any anxiousness I have over the trip is nothing compared to what I will feel next week as we face the reality of the reason for the trip.

Thankfully, for all of us, we'll have the diversion of a few days this weekend hanging out in DC with my college roommate before next week's appointments begin. Max is looking forward to the museums and a private tour of the White House (this kid really does have friends in high places) and I can't wait to get back "home". A mini-vacation is just what we need, the calm before the storm!

I'll close with a picture... I'm happy to say that the fire department was FINALLY able to come to our house to give Max a non-emergency ride! Thanks to all our Costco friends who made this wish a reality for Max!

Max, a few friends, and his new "ride".

Unexcused Absence

2011-05-19T15:29:00.007-07:00

I’ve been very quiet lately for several reasons, the first and more difficult reason is that I really haven’t known what I could write about and not seem like a candidate for a mental institution. I find myself in a “funk” that’s difficult to explain or escape. I vacillate between anger and tears and I never really know what will set me off. You know it’s bad when you cry while listening to the baseball scores on Sports Center, even when your team wins! It has always bothered me when I get like this because I am still sane enough to realize that negativity is just a waste of time and God knows we don’t really have time to waste.

The second reason that I’ve been “out of blog commission” is that we’ve been running around trying to give Max as many opportunities for fun before his “stinky summer” (his words) begins as possible. On this front we have been very, very successful! It seems like it’s been one wonderful event after the other. On Saturday Max helped his flag football team win its championship game, even quarterbacking a touch down!

On Tuesday evening Max was the special guest of Willie Bloomquist of the AZ Diamondbacks. You would have thought that Max died and went to heaven. In fact to quote him as he walked into the team locker room, “You guys REALLY live in paradise!” I don’t think I can say enough about how Willie and his teammates treated Max to the “night of his life”. Willie was so very kind and gracious to all of us, he was an absolute natural with Max and kept up with his myriad of questions, recitation of baseball stats, and all around general goofiness. It’s nice to know that there are professional athletes out there who aren’t all about ego and paychecks.

Although all of these activities have been blessings it has been bittersweet because we see Max slowing down and fatiguing more easily, all medical signs that this surgery is so very necessary to save his quality of life. Uh oh, I may just have put myself back into my funk! Either way enjoy a few photos of Max’s most recent social events.

Max and Willie

Max, Chris Young, and Ryan Roberts

2011 Champs!

QB Max

The Better Late than Never Birthday!

2011-05-04T17:06:00.002-07:00

I have always readily admitted that I am no candidate for "Mother of the Year". Once again this week I proved myself right. Monday was Max's birthday, the BIG 1 - 0 baby, the double digits, the start of a new decade -- well you get the picture. And what does his mother do? Post some incredibly beautiful post with a professional quality video? Oh no not me! I'm already two days late and the following video is nothing other than a collage of photos from each of his ten birthdays. As "creative mom" I suck, but in my defense I did bake nearly 100 chocolate cupcakes for him to distribute to everyone and their brother at football, school, and anyone else he may have passed by this last weekend.

Max had a great day, we brought pizza and the now famous cupcakes to his class at lunch. The kids had a blast and we all know how much Max loves to be the center of attention. The party was just what he needed to clear up his "surgery funk" a bit. Fun was had by all!

Make an on-line slide show at www.OneTrueMedia.com

Our Bunnies

2011-04-24T00:22:00.004-07:00

Happy Easter!

Buona Pasqua!

Love -

Michele, Patricia, Ellie, and MAX

Max's Big Outing

2011-04-19T18:52:00.003-07:00

A few weeks ago Max went on his first ever overnight field trip! Of course he had his own two personal chaperones in tow....Mom and Dad! Although Michele and I could certainly come up with several other more exciting vacation ideas than traveling to the Grand Canyon with a hundred or so 4th graders it was truly priceless to watch Max so thoroughly enjoy himself!

Photo and video editing at www.OneTrueMedia.com

D-Day

2011-04-14T14:34:00.003-07:00

On June 6, 1944 at 6:30 AM the Allies stormed the shores of Normandy. On June 6, 2011 at 6:30 AM Max will storm the shores of an Operating Room at Johns Hopkins. Perhaps it’s only a strange coincidence but I prefer to think of it as a symbol – sort of a victory will be ours! Just one more important date in “Max’s War”, one more thing to conquer just as we have conquered so much these last ten years. Please keep praying for all of us, now that we have an actual date that can be circled on the calendar we’re all getting a bit edgy!

Letters Home

2011-04-05T11:01:00.005-07:00

There has been so much going on the last few days, what with visits to the ER, multiple doctor’s appointments, and my continued fight with the state of Arizona to provide Max with the care he needs that I really haven’t known what to post about – sort of “pick a topic any topic” situation. But in the end I realized that most of my list is really just our typical stuff, nothing glamorous or earth shattering and certainly not newsworthy. My lack of posting material came to a screeching halt when Max came home from school with the following note for his dad. This note resulted from a conversation that Michele and Max had that morning before school. Max was beginning to recognize the inevitably of his upcoming cardiac surgery and was peppering Michele with questions, all of which Michele answered in his usual soothing manner convincing Max that everything would be OK because he would have so much more energy to run around and play after he gets his new valve. Max seemed to walk into class that morning at peace with what needed to be done. And then Michele picked him up after school…..not so much at peace anymore Max shoved this note into his father’s hand. There are many heart wrenching qualities to Max’s words. One, he took the time to write the note in Italian (mostly) which is a bit of a stretch since he’s never had any formal writing classes in Italian and, two, notice the way Max signed the note. Max generally signs his notes with a heart and his name, if you look closely the heart he drew in this note is broken. The note translates as:

Your stupid surgery idea for me is bad and crazy, dad.

Max

P.S. You want to ruin my life.

So although Max is starting to accept things he still hasn’t completely come to terms with it emotionally. But then I really don’t think any of us have, how do you ever really come to terms with your nine year old son’s fifth heart surgery?

Hope, Faith, and Belief

2011-03-26T18:23:00.009-07:00

This blog tends to be an “all about Max” affair but Michele happened upon a story in an Italian newspaper that we want to share. While not specifically about our child it is about a child, now a young adult, who society “counted out” due to her disability. Many equate “special needs” with not so special abilities. But this young lady’s parents knew from the very beginning something that Michele and I have held near and dear these last ten years. No matter what, no matter where, no matter how, our children are capable of accomplishing everything a “typical” child (Hate, hate, hate this term. There is no such thing as an “atypical” child but that’s a story for another day) can accomplish. As long as we have hope and believe in our children, and ourselves, the sky’s the limit. Never, ever discount the sense of hope held tight by the parents of a special needs child. It is our hope that drives us to push ourselves, our children, their medical providers, and their schools to be certain that our children have every opportunity to succeed. Not only to succeed but to surpass their “typical” (there goes that odious term again) friends. This is the story of just such a child.

It’s the story of Giusi, a beautiful young lady who just so happens to have Down’s syndrome. But if you ask her she will tell you, “Io non sono Down, sono Giusi, Giusi Spagnolo”. “I am not Down’s syndrome, I am Giusi, Giusi Spagnolo.” She has never let the random name of a syndrome dictate who or what she is. Her parents made certain of this, to quote her father:

“Il segreto - spiega lui, ex presidente nazionale dell'Associazione famiglie persone Down - è non porsi ostacoli preventivi, conoscere a fondo i propri figli, cercare in loro il germe di un talento di un'opportunità, assecondarla in ogni modo. Una ricetta che credo sia valida per tutti i genitori, e non solo per quelli che hanno figli con difficoltà maggiori. In una parola, crederci”.

“The secret,” he explains, “is to not put up obstacles where they don’t exist, to know our children, to find in them the seedling of their talents, an opportunity, and to nurture it in every way. A theory that, I believe, is valid for all parents and not just parents of children with greater difficulties. In a word, believe in them.”

Recently Giusi became the first woman with Down’s syndrome to graduate from a European university. But she didn’t just graduate, she rocked it with a grade of 105 out of a possible 110 – an almost impossible feat! She hopes to go on to inspire and teach other children. But this is the story of just one child and her parents; there are many of us out there. We hold tight to our hope, our faith, and our belief that our children will have a future full of realized dreams and successes. No matter what a doctor and modern medicine may tell us we live off of hope, some days it’s all we have. The hope a cure will be found, that our children will have a chance to shine. In fact, there is another Italian family out there praying just such a prayer for their daughter. Serena is a beautiful little girl with a bright smile and dark eyes but shortly after her birth four years ago it became clear that something wasn’t quite right. And so her parent’s quest began. Although doctor after doctor has told them there is little they can do for their daughter these parents have not, will not give up. They believe in their daughter, they have hope and faith that a cure will come. After all don’t we all have hope for, belief in, and faith for our children’s future? Parents of children with special needs just have a little more than “typical” parents!

To read the whole article (in Italian :)) or at least see a picture of Giusi, go to: http://www3.lastampa.it/cronache/sezioni/articolo/lstp/394413/

We're Leaving on a Jet Plane....

2011-03-19T21:10:00.002-07:00

We saw the doctor this morning and after a quick exam she declared Max fit for travel! While Max was happy to be doing well enough to go home his real excitement came when the doctor asked him if he had any questions. His immediate response was, "Can I play video games?" When she replied positively I don't think Max really cared where he was or where he was going, after two days all he wanted was his PSP!

So we're packed up and ready to go knowing full well that we'll be back in another eight weeks. I jokingly told Michele that I wished they had lockers here so that I wouldn't have to schlep half this stuff back and forth.

Arizona here we come!

Surgical News - All Fronts

2011-03-18T17:40:00.003-07:00

Max, as always, sailed through surgery like the champ he is today, in fact, he surprised everyone but us! Because of his cardiac status it isn't unusual for new doctors and nurses to be extremely cautious with Max expecting him to pull some "stupid medical trick" but he always "behaves" and bounces back beautifully. The anesthesiologist was great (sometimes good things come to those who wait) and very attentive to Max. The surgeon was quite happy with the results and he expects a full recovery of the vision Max was losing. We'll see his senior fellow tomorrow and check back in with him when we're back in May.....

.....ah, yes, it's been confirmed that we'll be back as soon as school lets out. After our meeting with Dr. Vricella he presented Max at "cardiac conference" this morning where all of Hopkins' great cardiac minds convene to discuss their biggest cases (one more club Max qualifies for). This discussion confirmed that surgery couldn't wait and a brand new high tech mechanical valve that only Hopkins has been approved to use will probably be the best option for Max. Becasue Dr. Vricella leaves for Italy on June 16th we need to be in and out before then. Max will have to miss his beloved summer school but at least he'll still have a good chunk of his summer vacation left when we return to Arizona.

I'll close with a classic "Max Moment", we walked into pre-op this morning and all the nurses swung around and yelled, "Max is here!" With the thousands of kids that walk through this place I asked them how they remember all the kids. The reply? "We don't but who can forget Max?" Just one more set of "Max Fans"!

Picture Post

2011-03-18T17:20:00.004-07:00

Captain Max at the Helm in the Inner Harbor

A Beautiful Spring Day in Baltimore

Relaxing in Some Super Cool Hospital PJs in Pre-Op

War Paint
Surgical marks ensuring they correct the rights eyes. Oh wait, they're doing both eyes!

Surgical Update

2011-03-16T20:06:00.002-07:00

The surgery scheduler called back this afternoon to say we're a "go" for Friday morning, however, there has been a slight change of plans. They will be doing the surgery in the main hospital not in the outpatient eye clinic as they had originally planned. Obviously this is the part of the new plan we do like, we feel much better (and more familiar) with Max being on the main surgical floor. In the end maybe things do turn out for the best, who knows?

We are to report for "duty" at 6 AM and surgery will be at 7:30. Max is actually ready and seemed relieved when we told him we had a day and time. I don't really blame him, as stressful as this surgery has been for Max the uncertainty of the "when" just seemed to compound his anxiety. God bless this kid and all he deals with.

We are also thankful to Max's cardiac surgeon, when I called his office this morning to explain the situation he immediately agreed to see us after his first surgical case tomorrow. Barring any emergencies we should see Dr. Vricella at 1 o'clock to discuss the few options we have for Max's open heart surgery this summer.

We know the surgery is a reality so now we're praying that the doctors' will make the right choices regarding the best valve options for Max. Each type of valve has its own pros and cons so it's hard to figure out which option we feel most comfortable with.

The next two days will be tough, as much as I love Max's surgeon I really hate these appointments because there hasn't been much good news regarding Max's heart in a very, very long time. I'll update once we know more.

If it's Tuesday it must be.....

2011-03-15T19:53:00.007-07:00

......dermatology, cardiology, echo-cardiogram, EKG and cardiac MRI. Tuesdays at Hopkins are notoriously long, unforgiving days because this is the day most of the pediatric clinics hold their office hours. Heaven help the medically complex child (aka Max) who has to see several of these specialists who just so happen to be spread out over a radius roughly six city blocks in all directions.

Our first appointment of the day was at 8 AM and we finally dragged ourselves out of the hospital's main doors after 5 PM and a harrowing MRI. It was an emotionally draining day. Although all the news we received was what we already knew it never gets easier hearing that your son is a conundrum. Everyone puts a positive spin on Max’s uniqueness and they’re right, he is a miracle who just so happens to be “writing his own book”. The dermatologist actually asked us if he could present Max to his class during our next trip to Baltimore, he excitedly told me how these medical students might never see another Max again. I’ve gotten to the point that my son’s “guinea pig” status no longer bothers me, I too have a new, positive spin: he’s a “pioneer” not a lab rodent! Whatever helps me get through the day right?

On the cardiac front, no surprises – the aortic valve continues to leak severely and so we have confirmed a summer in Baltimore. Michele somehow convinced himself that we’d get another reprieve but alas it’s not to be. We’ll see the cardiac surgeon on Friday and talk specifics like dates, what type of valve (mechanic, donor, or if we’re really, really lucky a repair of Max’s own valve), and likely post-operative care. We’ve known for a while that this train was coming and today we heard its whistle so now we know that it’s not too far off. Doesn’t make it easier, just makes it real.

I know all this sounds pretty crappy but the day got even worse when we got home. We were barely through the door when the eye surgeon’s scheduler called to say that the anesthesiologist on service tomorrow decided at 4 o’clock that she doesn’t feel comfortable caring for Max and so they are scrambling to figure out how and when they can operate. All we know is it definitely won’t be tomorrow. I understand the fact that on paper Max is frightening and I guess I should appreciate a physician who is willing to recognize when they’re in over their head but I’m frustrated to know that we may not be able to do anything until Friday which means two things: one, Max will not have the recovery time we wanted before we fly out on Sunday and two, now I have to figure out how to reschedule the cardiac surgeon. Sometimes I feel like I’m trying to choreograph a production of dancers who refuse to be choreographed. In my frustration tonight I’ve been mad at the world, bit my poor husband’s head off, and otherwise cranky.

And so another Tuesday at Hopkins draws to a close and for this I am thankful!

Waiting for Cardiology.....Can you tell it's still early in the day?

Chillin' in the lobby between appointments, definitely later in the day!

Are we done yet?

Hello Hopkins!

2011-03-12T20:39:00.003-07:00

After an uneventful trip we have arrived safe and sound at ~~our Baltimore timeshare~~ Johns Hopkins Children's House. As we sat in the kitchen eating leftovers tonight I remarked to Michele that I sometimes feel like I never leave this place. Unfortunately this will be our home away from home for a while.

Tomorrow is a free day before the fun and games begin on Monday with pre-op appointments and blood work. Max has a million burning questions for the surgeon. The most important of which is how will he do the surgery on his eyes if he's asleep and his eyes are closed? Hopefully Max will be OK with the answer he gets because he really is perplexed about this whole procedure.

Thanking everyone for their love, support and prayers for Max and his entourage (better known as us). Stay tuned....

Not So Good to Go....

2011-03-09T15:21:00.004-07:00

Seconds after I hit the "Post" button on my earlier entry my phone rang, it was Max's Nurse Case Manager from APIPA (his State Medicaid plan). She was calling to let me know that none of Max's care next week, the appointments, the testing, the surgery, none of it would be covered by them. Really?! Because I was promised last fall by the same folks that Max was being given a Case Manager so that we would no longer have these issues. It seems that this was just another untruth (so as not to say lie) to keep an angry mother at bay.

The nurse actually sat and read the notes to me from the doctors at Hopkins, the ones that said Max is losing an important component of his vision and yet still was being denied surgery. It's truly not her fault, she tried, it just seems that the State of Arizona has put a price tag on a child's vision and has decided it was too expensive. Rather sarcastically I asked if the Seeing Eye dog would be covered.

We aren’t asking the State to pick up the whole bill; we’re asking them to pay the “leftovers” of what our private insurance does not pay. At most we’re talking about a few thousand dollars. So I guess Max’s vision isn’t worth $2,000 dollars and I will soon be receiving phone calls from the billing department at Hopkins. The fun truly never ends…..

Tears

2011-03-09T14:27:00.002-07:00

It seems like this has been a very emotional week for everyone, at least at our house. I am out of town for work so I missed it when Max came home from school yesterday crying inconsolably about next week's surgery. He told Michele that "he's done", I have long worried about the arrival of this day and here it is. The timing couldn't be worse as we head to Baltimore for one surgery and to schedule yet another. Michele, as only he can, talked Max down and by the time I was able to skype him he seemed to be himself, super excited to show me the almanac he had gotten at the school's book fair. I guess I should never underestimate this kid's ability to bounce back!

Today was my turn to break down. I had myself one of the best cries I have had in a very, very long time. Strangely enough it was for much the same reason as Max, I'm done! And the only thing that set me off was a few e-mails tying up some loose ends for next week, last minute appointments, etc. The next thing I knew I was bawling like a baby! Over an MRI, really? There have been dozens of MRIs over the last nine years, why was this the one that sent me over the edge? Probably because this is the one that will make open heart surgery a reality. Realistically May’s surgery is a reality but an MRI is black and white proof – there’s no denying it.

Maybe I should admit to myself that it wasn’t only the MRI that caused me to crack, I think the bigger issue for me is the creeping fear that the doctors are not finding any other male children with Max’s genetic make-up and medical issues. Don’t get me wrong, I am thrilled that there aren’t other kids facing Max’s mountain of maladies but I do fear that with a lack of research subjects Hopkins will be forced to end their study. I have to be honest, no one has ever hinted at this and it could just be the emotional imagination of an exhausted mother but I have always had a sixth sense about these things. Hopefully I’ve worked myself up over nothing, there’s a first for everything, right?

So the good news is now that we’ve all gotten it out of our systems we should be good to go for next week. Should be……

Explaining Reality....or Not

2011-02-22T14:08:00.000-07:00

The last few weeks have been difficult. Not necessarily for any one particular reason or even because Max has been sick. Rather I think my issue has been the reality of the next few months and what they hold.

Next month’s surgery is pretty much handled, emotionally, physically, and thanks to many dear people financially. I think the big issue is this summer. Max has only a very, very vague notion of the cardiac surgery looming on his horizon. Michele and I have always felt that it is not necessary to emotionally burden Max months before any medical treatment so as to cut down on his anxiety level. However, during the last few weeks Max has started to list the things he can’t wait to do this summer, including: swimming in his pool every day, playing baseball in the backyard and going to as many games as possible, and believe it or not, the first thing on his “to do” list is to go to summer school. Strangely enough this kid LOVES to go to summer school! But as I listen to him excitedly telling me about all the wonderful plans he has for his summer break my heart sinks just a little deeper. How can I explain to him that this summer will be different? That this summer is going to stink. How and when do I explain this? How can I possibly tell my son that it will be just one more school break spent in the confines of a hospital?

I don’t know how and to be honest I’m dead tired of having to explain this to Max. I know life isn’t fair and I know we all try to teach our kids this but with Max I’ve never really had to review this lesson. Max has learned the hard way that life isn’t fair. How can I explain all of this to him when I too ache for some normalcy? To watch him swim back and forth in the pool so proud of his new found swimming skills, to hear about his day at summer school, and even to toss a ball in the backyard every evening in 110 degrees (I must admit I hate this activity but would do it gladly in light of everything else).

Obviously logic has told me that there is no way I can broach this topic with Max until well after his eye surgery in a few weeks. But maybe I’m just being a coward, maybe I should just be honest the next time he brings up registering for summer school or getting tickets to the All-Star game. I really don’t know what to do but for now maybe I’ll continue my ostrich impersonation and keep my head buried in the sand…..

Scratch Boring.....

2011-02-06T19:24:00.002-07:00

I know I've said this a million times but here goes a million and one.....when will I ever learn to keep my BIG mouth shut?

Friday evening as I came through the door from work, Max ran up to hug me and I felt as if I was being squeezed by an electric blanket. A few minutes and a thermometer later and we knew why, he was sporting a temp of 102.5. This leads me to question number one, how on earth does a kid who finished a ten day round of antibiotics less than 48 hours earlier end up sick again? Oh right, I forgot this is Max, our possibilities are endless. Endless but not always positive.

Saturday morning arrives and we're still at 102.5, have a cough, and a river of snot so off we go to the pediatrician. An exam, a swab, and 15 minutes later we have a diagnosis.....H1N1.....again! So question number two, how does the same kid get the same flu vaccine two years in a row and get the same H1N1 flu two years in a row?

We truly do need to start buying lottery tickets, the way we beat the odds time and time again leads me to believe we're owed at least one "positive" jackpot. Not just the medically impossible one.....

Business as Usual….

2011-02-04T12:11:00.001-07:00

What a wonderful thing! I can actually report that I have very little to report. We’ve finally returned to the rhythm of our daily lives, which is definitely what we need at the moment as March draws ever near.

Max is beginning to question the actual surgical procedure for his eye surgery. The part that stumps him the most is how are they supposed to operate on his eyes if he’s asleep and his eyes are closed? Something tells me a bit of time and some googling on his part will clarify this for him. His other concern regarding March’ trip to Hopkins revolves around the ratio of doctors’ appointments to free time. He’s a busy guy with a full schedule of video game room time, eating crab cakes, and otherwise wreaking havoc. Hopefully, we will be able to set aside enough time for him to do these things.

Other than settling the few questions still on Max’s mind all tactical plans for the trip are covered, except for one small little thing – Ellie. Ellie asked several months ago if she could skip this trip because it was Spring Break and she wanted to do something fun. I can’t really blame her for wanting a diversion from all of this but right now something “fun” seems like it might just be being locked up in the kennel with the dog, a bowl of water, and a bowl of food. Somehow she isn’t clear on the fact that 15 year olds don’t get to stay home alone for ten days.

So that’s just about it at the moment, it’s really nice to be boring! Have a great weekend all!

Dropping Like Flies

2011-01-19T16:39:00.002-07:00

One by one we've all fallen. At the moment the house sounds like a TB ward with plenty of hacking, sneezing, and moaning and groaning. I don’t remember the last time we were all sick simultaneously but let me tell you this week has not been fun!

Typhoid Max (as we have named him in honor of his plague carrying abilities) is now probably the healthiest of all of us, he's still not breathing at a 100% and his cough is frightening but hopefully the worst is over. It has to be, none of us are healthy enough to take care of him!

So I am checking the respiratory flu off our “to-do” list and now all we have to do is wait for the stomach flu….I can’t believe I just said that. One of two things will happen as a result of this comment: one, by mentioning it I will have warded off the evil spirits or two, more likely than not I will get what I asked for and we can go for “round two”. When will I ever learn to keep my BIG mouth shut…..?

Saturday Night Fever

2011-01-17T15:34:00.000-07:00

Literally. When a glassy-eyed child falls asleep in his dinner plate something’s up and that something is generally not good.

Max had started with one of his slight coughs earlier in the week which usually signals that the best is yet to come, and come it did with a fury. We spent Saturday evening setting up clinic. Each piece of medical equipment came rolling out one by one. We started with the pulse oximeter which indicated that Max’s heart rate was way up, signaling the arrival of a high temp. At the same time his “sats” were really low (this means that Max’s blood was not ‘saturated’ sufficiently with oxygen - although he was breathing hard he was not getting enough oxygen into his blood) so out rolled the oxygen tank and the nebulizer for breathing treatments. Kids with heart defects can quickly wear themselves out when they struggle to breathe so this is always a big concern for us, we knew we had a very small window of opportunity to handle this issue at home and we were determined to stay out of the ER. Michele and I ran around, each of us performing our assigned tasks, getting meds, and of course trying to comfort Max. When we finally broke down and gave Max the “super-duper” cough medicine with codeine in it I’m pretty sure both Michele and I would have been quite happy to take a swig ourselves.

Once we got Max settled I crawled into bed next to him and watched the monitor like a hawk, as I saw his numbers trend in the wrong direction I started to calculate which ER we should go to. This involves a very complex algorithm which takes into consideration things such as how quickly things are transpiring and thus distance, which ER might be quickest (relatively), and most importantly where I want to be if we’re admitted (as if I want to be in ANY hospital). As monitor alarms sounded I prayed that we could just make it through the night because I was afraid that if we needed to go to the hospital Max would only become more stressed and then we’d really be in trouble. If he was having trouble breathing and regulating his heart rate while asleep I kept imagining how much worse it would be when he realized he was going back to the hospital. My prayers were answered, Max slept through the night and although his numbers were still not great they weren’t worse.

It was quite obvious that Max felt no better yesterday as he stayed in bed quietly watching TV and never once asked for a video game. If it weren’t for hourly vital sign checks I may just have forgotten he was in the bedroom. Max and quiet….now there’s a concept!

Now I’m waiting to hear from the pediatrician although I know there’s really nothing else we can do other than wait for the cough and congestion to subside. The other 64,000 dollar question will be school tomorrow – of all weeks this is Max’s week to be “star student” and he’s determined to not miss his 15 minutes of fame….as if this kid isn’t famous enough!

Acceptance

2011-01-09T21:31:00.002-07:00

“I can’t wait to go to Baltimore in two months!” I admit I was shocked to hear these words tumble from Max’s mouth so matter-of-factly as if he was talking about some super cool vacation and not a trip that involves countless appointments, testing and even surgery. Over the last few days I’ve noticed that Max seems more positive about his upcoming treatment, there is less complaining and more acceptance. He speaks about it more naturally, questions less, and seems to have come to terms with the whole mess.

Over the years I have seen an evolution in how Max deals with everything that his life throws him. Obviously during the first year or two the only emotions we dealt with were our own, Max was too little to express very much. We knew this would change and of course it did as he grew. As a toddler we expected tantrums, anger, and general uncooperativeness. There was none of these things. Max seemed to accept it all as part of life, much like other children his age accept bikes, balls and cartoons as part of life. Max was a model patient; sweet, never complaining, and brave beyond words. We were in awe of our little boy’s courage as he faced things that we could not imagine. He seemed to go through life with that huge smile of his on his face as if he didn’t have a care in the word. All of this was his “normal” and he was fine with it. Just as before we knew this too would change. In the last year or two there seems to be some deep anger and frustration on Max’s part when dealing with his medical care. He blames us, he blames the doctors, heck he’ll blame anyone who stands still long enough. But when all is said and done he comes to terms with what looms on his horizon and he returns to his sweet, goofy little self and marches on. We’re still in awe of our son, it is without doubt extremely difficult to watch Max grapple with his reality but it is because of his resilience that we too are able to deal with it all. Certainly there will be more changes ahead but with Max we can count on one thing – the incredible smile which always returns to his face.

And so it seems acceptance has hit Max as regards his surgery in March, or is he just looking forward to Baltimore crab cakes and DC cupcakes?

For Better or Worse

2011-01-03T00:00:00.000-07:00

What a year it’s been, perhaps one of the toughest we’ve had. Obviously the first few years with Max’s health were extremely difficult but since about the age of three things have been relatively stable. Yes there have been a few intense moments: an open-heart surgery, the realization that we are dealing with an unknown genetic syndrome and a few others but none of these things came completely as surprises or at least not emergent surprises. Emergency rooms, surgeries, and hospital stays were neatly tucked away in the back of our minds as what we used to do not what we do now. This last year has quickly shown us how terribly wrong we were to allow ourselves to be lulled into a false sense of normalcy, nothing can be “normal” when your son faces so many serious health issues. Twelve months ago we didn’t even know that Max was having vision problems. We didn’t know that his aortic valve would give out so soon. We didn’t know….

But that was then and this is now. Its 2011 and now we know. Over the last day or two I must admit I’ve cringed to hear people say how happy they are that 2010 is over and how much better 2011 will be. All I can think is that yes 2010 stunk, but how much better can we realistically expect 2011 to be? Max has two major surgeries in the next six months each involving a good amount of recovery time. How can any of this be “better”? Indeed, 2011 promises to be another tumultuous year but we’ll get through just as we’ve gotten through all the others – together. We’ll cry when we need to, laugh when we can, and kick butts when we have to! It won’t be “better”, it won’t be “worse”, it will just “be” and that’s OK when it’s all about the most remarkable little boy in the world whose smile, sense of humor and shear sense of self makes it all “better”.

A Visit from Hope

2010-12-28T10:37:00.009-07:00

Plans for our March trip to Hopkins are already starting to come together, appointments are being confirmed, test results are being FedEx'd around (yes, I finally got the discs from PCH!), and insurance companies are being notified. This leaves us with the logistics of travel plans. These plans are probably the toughest part of our trips to sort out because after four years of "back and forths" to Baltimore the bank and credit cards have run dry, but hope has not!

Last week we had a visit from our friends at Hope Gives Ministries, Max was as always happy to entertain his visitors and we were thrilled to hear that they would work with us on travel plans. What a Christmas blessing! I don't know if I can adequately express just what this support means to us because without it I don't know if we could provide Max with the medical care he needs and deserves, thank you so much Michelle, Kelly and Joni!

Max with Michelle and Joni

Max and Kelly

'Twas the Night Before Christmas....

2010-12-24T23:00:00.005-07:00

...and all through the house not a creature was stirring.....except for me because there is way too much to do before the short people awaken from their slumber expecting to see that a jolly old elf and his eight tiny reindeer have paid them a visit....

.......so dash away, dash away I must but not before leaving a few pics of Max and his entourage getting into the Holiday spirit!

Max unwinding after a wild 4th Grade Christmas Party!

I know, I know....I'm too cute for my hat!

One last chat with the "Boss" before the BIG night!

Merry Christmas to all and to all a good night!!

And so the Nightmare Continues

2010-12-16T15:23:00.000-07:00

I spent a lot of time today trying to figure out how to write this post. I am beginning to feel like all I can share is “doom and gloom”. I’ve turned into “Negative Nelly” and it hurts that I haven’t been able to post much good news lately but there just hasn’t been much of it to post.

We had our follow-up appointment yesterday with the general surgeon we have used in the past. I have to admit that this guy has never been Max’s biggest fan, from birth it has been as if he isn’t happy if he’s not giving us some horrific diagnosis/prognosis for Max. That first year when we were inpatient, although it was his partner that was Max’s primary care provider, this doctor insisted on testing Max for several horrendous disorders. Often not once, not twice, but three times. Each time he almost seemed disappointed when the test results came back “negative”. He was part of the team of doctors that used to tell us, “It’s just Max” because they didn’t really know what Max had and they didn’t want to admit their own medical ignorance. Anyway some things never change…..

After a ten second conversation with me and without even acknowledging Max’s presence in the room, he ran off to read the CAT scan that had been done while Max was in the hospital last week. It seemed as if the exam room door had barely shut when the medical student was sent to summon me. There was the doctor in front of a computer screen shaking his head, “Do you know what this is?” he nearly screamed at me. Before I could answer he said, “This is pseudo-obstruction of his bowels and it’s a miracle his intestines even work. Although it’s only a matter of time before they don’t work anymore and he’ll be completely dependent on IV nutrition.” He continued abruptly, “...and there’s nothing we can do for this…enjoy this time because it’s only going to get worse.” All of this without taking a breath or noticing that I was about to faint, he probably didn’t care because he was too focused on delivering another horrific diagnosis – after all it’s been nine years and he needed to get another one in.

I am rarely, if ever speechless but I have to tell you this time I was. Max stood beside me and had heard everything so I was forcing myself to hold it together but I just kept imaging Max no longer being able to eat and it took everything I had in me to not scream or rage at this doctor. In the end it didn’t really matter, he was already out of the room with his entourage complaining to them about how long this dictation would take!
Today is a new day and I’ve decided that this is just another “fire drill” sparked by one man’s desire to see Max as nothing more than a really bad train wreck. Oddly enough I am doing better than Michele is, I usually rely on him to hold me up – this time we’ve switched roles. I am convinced that if Max had always had this problem, as this surgeon insists he knew all along (strange this is the first time I’ve heard it from his mouth…), some other doctor with more skill and more knowledge would have already picked up on it. I’ll start sending the discs out to Hopkins and wait to see what they say before I truly panic. That is I’ll send them the disc if I can EVER get PCH to produce one!

At this point I am praying for a respite because I am seriously concerned about us and our stress level. We need a bit of peace and tranquility, at least through the end of the year. 2011, here we come! Certainly it has to get better!

It's begining to feel a lot like Christmas....

2010-12-13T11:59:00.005-07:00

This weekend, far away from hospitals and doctors, we finally got to have a bit of Christmas fun. On Saturday we went to two Holiday parties which meant two visits to Santa! The first party was at the home of long time supporters of "Max's Market" who give to the kids at PCH so generously each year. The other was an annual super fun event that another "heart" family holds for children with heart defects and many, many other ailments.

These photos are from our first Santa visit, enjoy!

Let's talk about what I'm expecting of you this year, and yes I've been super good all year so there's no need for you to check with my mom......

How can you possibly say "no" to that smile?

You're never too old to believe in Santa!

Quiet Week

2010-12-10T15:16:00.002-07:00

It’s been a very quiet week. Max is back to school and finally caught up with all the work he missed. I don’t know who’s more exhausted him or us from it all but I do know that it was priceless this morning watching him bound into his classroom so excited to share his social studies project, an Indian dwelling he made with his dad. By “made with” I mean it was done while Max had IVs in both hands so you can just imagine the help he needed from Michele. I really should have taken a picture because it was so comical to watch the whole construction process. In fact, I was convinced that Max’s IVs were going to be super-glued to his wrists but somehow the nurses were able to remove them.

Max seems to be on the mend, his abdomen only hurts if we press on it so the pain is obviously subsiding. He’s even walking upright again! Unfortunately, we did hear from Max’s surgeon this morning and because we were seen by his partner last weekend and not him he wants to see Max next week to be sure things are resolving. Hopefully he doesn’t find something he wants to fix. He’s a good surgeon but he does love to find things to fix and none of us are particularly interested in giving him any business.

On the Hopkins front the cardiology group has been reviewing the last three years of scans they have done on Max and they find no reason to be concerned about an aortic aneurysm. Just another false alarm in what seems to be nine years of fire drills which, thankfully, seldom amount to much. It never ceases to amaze me how much stress we can build up over nothing, talk about your highs and lows! In the mean time, they have also scheduled all our testing and appointments around Max’s eye surgery so that we can be sure to fit everything in while we’re in Baltimore in March. It seems like we just got home and we’re already planning our next trip!

I’m hoping for the calm to continue this weekend so that we can actually start to get Christmas rolling at the Marangella Ranch. I swear you would never know its Christmas by looking around our place. We’ve given up on the idea of decorating the yard (very much to Max’s chagrin) but I would like to get up a few decorations in the house if for no other reason than to lift everyone’s spirits a bit!

Have a great weekend all!

Fire Drill

2010-12-06T14:58:00.001-07:00

We’re home…again. Fingers crossed we’ll stay here because I’m pretty sure none of us could stand another minute in a hospital.

We were packed and ready to go yesterday when the pediatrician approached us with a look of horror on her face, this is never a good sign but when a doctor actually sits down next to you before talking you are in BIG trouble. In her hand was a copy of the final reading of Max’s CAT scan (evidently everybody and their brother had read it except for the pediatric radiologist who has the last word) with certain sections highlighted in yellow. Also not a very good sign.

It seems that Max’s abdominal aorta is dilated which can be a life threatening situation. Once I started breathing again I handed her my cell phone with the number of Max’s cardiac surgeon in Baltimore. Although she was leery of calling a doctor on a Sunday I told her that this was Max and that’s what doctors' cell phone numbers are for. When she got off the phone she remarked that Dr. Vricella had been extremely polite and expressed no concern with the numbers on the report. He told her they would do absolutely nothing for an aneurysm of the dimension reported on Max’s scan and that they would continue to monitor it every six months when we go to Hopkins. For all he knew Max’s aorta may have always measured larger than usual, without looking at previous scans he could not know one way or the other.

Because I no longer believed anything I heard from the PCH doctors and because I was clearly having a breakdown, I handed Michele my phone and told him to call the doctor himself because I wanted to hear the story from the ‘horse’s mouth’. During the conversation the surgeon did confirm to Michele that he was unimpressed with the measurements and the whole mess will be handled at Hopkins in March and May. He also confirmed that he would be doing the valve surgery right after school lets out for the summer.

This leads us to a couple of conclusions:
We always seem able to diagnose our son before the doctors can. We have been telling everyone to check the aorta since this whole thing started. Three hospitals and several doctors could not see what we knew by instinct, not medical training, was there. How could this scan pass through so many hands and no one detected an aortic aneurysm? Very scary.
As long as it is possible Max will receive all his care at Hopkins no matter which of my organs I have to sell on the black market to pay for it. Pediatric medical care in Phoenix is just too unreliable.

Another day, another fire drill!!

Saturday Evening Post

2010-12-04T17:24:00.005-07:00

Here we sit for what is probably the billionth time (exaggeration) in a Hospital on a Saturday night...and no one believes me when I say that I have NO social life!

So far today we've had a ton of blood work, x-rays, and another CAT scan and we're still at 'we don't know'. Why must Max be so difficult to figure out? This morning seemed like a fire drill, everything was such an emergency. The pediatrician led us to believe we'd be in the OR at any minute and thus she was freaking out about some of Max's blood work. She felt there were serious issues with his liver (why is everyone so crazy about his liver if he just had a clean biopsy?) and was afraid of what this would mean for his clotting abilities after surgery. Should I even bother saying that I was completely freaked out at this point?

The surgical service seems to be much, much calmer about the need to cut. Obviously this is a very good thing. In fact, we are waiting for the surgeon to come talk to us about Max's abdominal scan although her resident already talked to us and thought it looked 'unremarkable'. We'll see what his boss has to say when she gets here....

Please, please send Max good thoughts and prayers he is having an EXTREMELY rough time with all of this. As hard as it is for us to see him so uncomfortable and scared I keep having to remind myself that it's nothing compared to what he is enduring. I'll keep everyone updated once we know more.

Here We Are...Again

2010-12-04T09:08:00.002-07:00

At 2 AM our hopes of being discharged home from the ER were dashed, we were officially admitted to a lovely double room (dripping with sarcasm) in the back corner of the third floor of Phoenix Children's. Max was obviously not happy about staying but became infuriated about having to share a room and told the nurse, "Take me back to the other room where there was a TV and I could do what I want without being disturbed. I need my privacy." It's been a very long time since Max has had to share a hospital room....

Right now the working theory is that Max has a hernia/obstructed bowel. He's not allowed to eat (another sore point) and they're running some more tests to be certain, the surgeon has also been called just in case......This super SUCKS!!!

Hospital #4

2010-12-03T21:29:00.002-07:00

We decided to spread the love a little bit, we're now in Hospital number four -- Phoenix Children's -- waiting for the docs to decide what's next......

Quick Update

2010-12-03T13:48:00.000-07:00

We are home….and thrilled to be here! The only part of being home that stinks is that Max is no better than he was earlier in the week, in fact we were only “kicked to the curb” because the doctor’s just didn’t know what the problem was and because they didn’t want to admit that they didn’t know they did two things:
They discharged us. YAY!!
They suggested that Max was “milking” the situation so as to play video games and skip school. I don’t know that I have EVER been so offended in all my life but my best stupefied answer was, “Really? That’s the best you’ve got? Considering the kid has video games at home and is sitting in bed doing his school work I find it hard to see how your “medical” opinion holds water.” We were summarily discharged; evidently they don’t like sarcastic mothers!
So as of now we have two very frustrated parents because we’re running out of doctors to take Max to and one very sad little boy because he just feels so miserable. By the way, the pain is so bad that he can’t play video games for too long without getting tired so he’s doing his homework instead….maybe I’ll videotape it and send it to the medical genius who diagnosed him with a bad case of “milking it”.

Tell me it isn’t so….

2010-11-30T21:35:00.003-07:00

I am writing this from Max’s bedside as he sleeps…..in the hospital! Max started to complain of pain roughly around the site of his recent biopsy yesterday morning and it progressed from there throughout the day. By the time I got home from work he was crouched over hoppling like a ninety year old man. All he was missing was the cane!

Because Max never, ever complains that something hurts we knew we had to do something. And what could that something be? What else but the ER! We arrived at our local ER around 7pm, got blood work, an ultrasound and a CT Scan done but didn’t get into a room until midnight! We didn’t see a doctor for nearly another hour. Michele is completely disappointed in me claiming that my ER times are way off and I may be on the cusp of losing my “Queen of the ER” sash.

Extremely long story short -- other than an ultrasound tech asking us about Max’s liver “masses “while she was waving her magic wand over this organ sending me into a hysterical recitation of the Rosary praying that she was just seeing shadows and not discovering some new horrible, horrible finding -- all his test results came back as “normal”. Obviously this is fabulous but it still didn’t answer the original question as to why Max couldn’t walk upright or have his belly touched without significant discomfort. So because I had the presence of mind to call Max’s local GI doc when we got to the ER (thank God she has never changed her cell number in the last nine years) the attending doctor called her to consult on our next steps. Unfortunately those steps led us straight to a “direct admit” at a nearby Children’s Hospital and Max being placed on the dreaded “NPO” list, it was like a double whammy in his world – no home, no food.

An evening in the ER, any ER, is always grueling but I can truthfully say last night was the worst. Max didn’t want anyone to touch him, we fought him on blood work, on an IV, and on just about everything else. Because this hospital wasn’t a pediatric facility the staff just didn’t know how to handle Max. Heck we can’t really blame them because we were also at a loss having never seen Max behave so rebelliously about his care. The hardest part came when he cried out at the top of his lungs as if pleading with the heavens, “I JUST WANT A NORMAL LIFE!” How do you handle that?

So in less than three weeks we have had the great pleasure of hitting three hospitals, perhaps we can start the Zagat’s guide to medical facilities…..all I know is that we haven’t had such a crappy run of “luck” (term used very loosely) in an extremely long time and we need it to end pronto!

To close, a few words of wisdom from Max as we motored from Hospital #1 to Hospital #2:

- “Mom, when we get to the new hospital please don’t call me ‘stink’ like you always do.”
- “OK Max what do you want me to call you?”
- “Snoop Dog works…”

Happy Thanksgiving to All!

2010-11-25T11:11:00.006-07:00

"We can always find something to be thankful for, no matter what may be the burden of our wants, or the special subject of our petitions."

-Albert Barnes

These are the words I have decided to live by this Thanksgiving, no matter what we are confronting at the moment there is ALWAYS something to be thankful for. That's my story and I'm sticking to it!

Wishing all our family and friends a very happy, healthy Thanksgiving!

Michele, Patricia, Ellie and MAX

Mild Changes

2010-11-24T10:57:00.001-07:00

We heard from Max’s gastroenterologist yesterday with the news on Max’s liver biopsy results. As is typical with Max the results show “mild changes in his liver cells”, unspecified, but changes none the less. According to the doctor all this really means to him at this time is another exciting piece of information for their research study on Max. I don’t know how I feel about my son causing doctors to go “Hmmmmm, interesting” and get excited about more of Max’s cells. Is this a good thing, a bad thing or just a thing? Hmmmmm….

Now we’re just on pins and needles waiting to hear what the cardiac surgeon will have to say about the timing of the open-heart surgery, what his approach will be, etc. Part of me hates waiting; the other part is relieved because not hearing the final decisions allows me to pretend that the whole thing isn’t really real. I have to admit that for some reason I’m having an especially difficult time dealing with all this, perhaps it’s the holidays, perhaps it’s that I’m just battle weary. Who knows? For now I’ll take yesterday’s news and try not to obsess too much about what tomorrow’s news might be.

Our New “Normal”

2010-11-18T09:51:00.001-07:00

We’ve been home for a few days but my mind is still so cloudy I have found it difficult to post anything coherent. I feel a bit like I’m walking around in a dream, a really, really bad dream.

We’re back to our normal routines, school, work, therapy, homework, etc. but nothing truly seems “normal” at the moment. Michele is busy researching the two upcoming surgeries so that we can better understand what the procedures entail, the best alternatives for Max, and so that we’ll have the right questions to ask as we talk to the doctors over the next few weeks and months. I have returned to fighting with insurance companies in order to be certain that they will cover what they need to for Max. This is an unending battle, especially with the State of Arizona who has once again decided that there is no reason for Max to go out of state for medical care. Although certain unnamed (to protect the innocent) individuals working within Max’s Medicaid plan have told me to run not walk to Hopkins. Go figure, everyone involved knows it’s best for Max to receive care elsewhere but yet the bureaucracy stops the logical from happening. In the end I will fight tooth and nail for months, wasting everyone’s time and taxpayer’s dollars only to have the state approve everything. What an exercise in futility!

As for the kids, even their “normal” doesn’t seem so normal. I received an e-mail from Ellie’s English teacher this week which I confess I opened with trepidation. After my experience with Max’s teachers the last few years I’ve come to expect news from teachers to be less than positive. However, I was pleasantly surprised, in a strange sort of way. Ellie’s teacher was writing to tell me how moved she was by Ellie’s journal entries from last week for her class. It seems Ellie was pouring out her heart and soul about everything that happened at Hopkins. I don’t know why this surprised me, maybe because I see all of this as the only life Ellie has know for the majority of her life, it’s been her “normal”. I admit I cried (Why not? I’m getting really good at it lately.) But I was also thankful that Ellie had a constructive outlet for her feelings when she obviously wasn’t able to share them with us. After the e-mail I asked Ellie if she wrote in her journal because she was uncomfortable talking to us. Her answer made me cry again, she didn’t talk to us because she knew we were already upset and she didn’t want to upset us anymore. More often than not my kids drive me crazy and there are days I’d like to toss them both out a window, after all what mother doesn’t have those kind of days? But the last few days have made me appreciate just what great kids I have. They, like us, have learned to roll with the punches and get back up better people for it.

Perhaps Max is the only one who really is back to normal. He wakes up with a smile on his face and goes to bed with a smile on his face and in between he’s talking a mile a minute, running around wrecking havoc wherever he goes, and just generally being Max. God bless that kid, somehow it makes it easier to get through all of this!

To close on a positive note I spoke with Max’s GI doc yesterday and so far the pathology report for Max’s liver biopsy shows nothing to be worried about. We should have the final report next week because the doctor ordered a few extra tests that take longer to get back. I am cautiously optimistic that we can strike this off our list of things to worry about….

What a Week....

2010-11-12T20:57:00.004-07:00

It’s finally the end of the week and I can truly say this was the hardest week at Hopkins we’ve had since Max’s aortic repair in the summer of 2007. Everywhere we turned the news we received was not what we hoped for, appointment after appointment I could feel the life being sucked out of me. We came hoping to meet with the doctors, both old and new, have our check-ups, and be done for the next year. Instead we have learned that we need to come back to Baltimore in March for eye surgery and May for open-heart surgery. How does this happen? How do we go from our “once a year” visit to this? Logically, we are well aware of Max’s medical issues, we’ve always known what was on the horizon but when the horizon is closer than you think, when the future becomes now, logic flies out the window.

After talking to Max’s cardiac surgeon today we realize that his valve repair is necessary sooner rather than later. Max’s aortic valve insufficiency has worsened at a rate of about five percent in the last few months, now I’m not great at math but at this rate of increase even I know we have less time than we hoped for. As the doctor spoke I simultaneously held back tears and thanked God for Girl Scout cookies because it was the box of cookies that Dr. Vricella gave to Max as we sat down on his sofa that kept him happily occupied and unaware of the fact that his mother was falling apart. This was especially important because Max has been commenting all week that every time we go to see this doctor my face gets red and I cry. Thankfully the one time he craned his neck around to look at me I was still composed so he returned blissfully to eating his cookies. All that’s left at this point is for Max’s case to be presented at Cardiac Conference for review as to the how, what, and when. We are hoping to make it to May to give Max the most time possible to recover without missing school but at the end of the day if they tell us “now” than “now” it shall be.

I don’t even know what to think about everything that has happened this week. I know I’m exhausted which means a rational thought process is difficult at best. I’m feeling overwhelmed but I realize that what I think, what I feel is just not important. What’s important is Max. Every time I look at him I choke up thinking about what he’ll have to endure. He’s a baby, he’s only nine years old and none of this is fair. Tonight my heart is broken for him and I am praying for the strength to get him (and all of us) through the next six months.

Tomorrow we go home and with a little luck the miles that separate Arizona from Maryland will give us the ability to see all of this for what it is, a painful but necessary part of Max’s journey.

Inpatient

2010-11-10T19:01:00.003-07:00

As it is with most things in our lives today’s biopsy did not go as smoothly as we had hoped. During the procedure Max’s liver was bruised and bled, the doctor saw the blood clot so he felt confident that the bleeding would not be significant enough to cause serious problems. However, this is Max and everyone tends to be over protective with him and so we have been admitted for observation tonight. As you can imagine Max was not very pleased with this decision and so the Recovery Room nurses saw very little of his charming nature. Instead they were faced with a rather belligerent child blaming the world for his problems and demanding tacos. Evidently most patients do not wake up from anesthesia screaming for Mexican food so no one knew what to do. Thankfully his GI doc knows Max and his appetite and so we were given the blessing to run down to the Cafeteria for a “Taco Supreme” plate. Max’s tacos must have become a folklore of sorts because every doctor and nurse that walked into our room asked me incredulously if it was really true that Max was able to eat like that moments after waking up. My answer was, “Look we’re on number 37 here and he’s capable of just about anything!”

And so Michele and Ellie are preparing to leave and Max and I are settling into our hospital digs. Here are a few photos from the Recovery Room, notice the less than enthusiastic smile on his face.

Numbers 37, 38 and 39 all in One Day

2010-11-09T18:11:00.003-07:00

Today was another long and emotional day in what has been nine years of long and emotional days. We knew today would be logistically grueling, four doctors in one day is a tight fit under the best of circumstances. However, logistics soon took a backseat to emotions.

We started very early this morning with Max’s GI doctor who confirmed that Max’s labs were still high and the biopsy was absolutely necessary, there was really never any question but I think he wanted to assure us that we had made the right decision. When Dr. G turned to Max to ask him what questions he had about the procedure Max’s upper lip began to quiver and the tears started to fall. Max never, ever cries about these things and as if his tears weren’t gut wrenching enough he then buried his face in his hands crying and apologizing for crying all at the same time. By this point there wasn’t a dry eye in the room, including the doctor’s. It was hard enough to see Max so obviously upset but it was even worse to hear him apologize for being upset – I think he felt like he was letting us down by not being stoic. Have I ever mentioned how much this sucks? And so tomorrow morning at 8 am Max will have procedure number 37. It’s a scene we’ve played out over and over again, I will walk him into the operating room, hold the mask over his mouth while I hold him and he falls asleep.

We then moved onto ophthalmology, I was convinced they would look at Max’s eyes and tell me I was nuts, there was no problem with his ability to focus. I say convinced because I was really trying to block out that there might be another problem. Almost immediately the doctor knew exactly what the problem was, the problem with him knowing the problem? It means corrective surgery, procedure number 38, to tighten the muscles in Max’s eyes. It seems that his muscles are weakened and he is losing his depth perception. If left untreated he will lose this perception completely. This really does explains a lot, for years Max has had problems going up and down stairs, often bending over to almost a crawl as a toddler would when learning to climb stairs. We have always chalked it up to the fact that because we don’t have stairs in the house he just doesn’t get enough practice. Everywhere we went with stairs we would make him go up and down and up and down without any improvement. No wonder! He can’t judge the distance between steps, we have been pushing him for so long to do something he couldn’t see! Have I mentioned how much this sucks?

We finished out the day with cardiology. Unfortunately, Max’s aortic valve continues to leak “severely”. Although we haven’t seen the cardiac surgeon yet (we see him on Friday) the cardiologist told us that they had had a quick conversation and decided that doing a cardiac MRI now would not be useful because it’s been less than a year since the last one. This means it will need to be done in March so that they can better gage when they will have to replace Max’s valve, procedure 39. Again, have I mentioned how much this sucks?

So very long story not so short, we will be returning to Baltimore in March for procedure number 38 and further testing to plan for number 39. With three trips to Hopkins in less than a year I need someone in the family to get a job with the airlines. I wonder how Max would do pushing a cart up and down an aisle serving drinks?

So as not to make this post a complete downer I thought I’d include a picture of Max during his eye exam, those are some spiffy new glasses aren’t they?

Safe and Sound

2010-11-07T09:50:00.004-07:00

We've arrived at our home away from home in one piece. The trip, thankfully, was uneventful and now we're just trying to settle in before the fun and games begin tomorrow.

The kids are disappointed because it is cold and windy and their parents have very little desire to walk around in the elements. We are obviously also worried about Max getting any kind of cold because it would only postpone everything we need to get done this week, so instead we're trying to keep him occupied with inside activities such as video games and movies because he seems to be getting a bit anxious about things.

Hopefully everything will go smoothly and there will be little need for any of us to be anxious!

Tomorrow’s the Day

2010-11-05T13:19:00.002-07:00

We’re officially in the midst of the last minute details for tomorrow’s trip to Hopkins. This is the part that always makes me the craziest: preparing, packing, confirming flights and appointments, making sure we have a place to stay, etc., etc. I just really hate the logistics of it all, incredibly, I tend to handle the medical stuff better….or at least I think I do until I’m hit in the face with it!

Basically it comes down to this: I’m spastic that I’ll forget something which in my mind is tantamount to complete and total disaster! Of course there’s really nothing that we could forget that can’t be replaced when we get there, we are going to hospital after all and it’s missing meds that freak me out the most. So I remind myself to breathe, slowly and calmly breathe.

Max on the other hand is as calm as I am hysterical. In his usual manner he has put a positive spin on the whole thing. He is looking forward to the plane ride, the cupcakes he will soon be receiving from Karen, and a quick sightseeing tour of DC so he can see where his Mom used to live. I love that he does all of this with a smile on his face, in the end it does make it easier for us knowing that he’s OK.

For those of you wishing to follow along with next week’s events I’ll be keeping the blog updated so feel free to check in on our medical adventures. Send lots of good thoughts and prayers Max’s way so all the news we get will be good news. Also a prayer or two for his hysterical mother is always appreciated!

A Star is Born.....

2010-11-02T19:20:00.002-07:00

again...in his own mind!

Much to our surprise Michele opened the paper this morning to find a HUGE photo of his son on the front page of the "Living" section of the Arizona Republic. We had no idea the story was going to run because we had been interviewed months and months ago. We were so happy to share our story of Max's room makeover with the paper because we love the folks at Room for Joy and we would do anything for them that might help another child get one of their fantastic rooms!

http://www.azcentral.com/style/hfe/decor/articles/2010/11/02/20101102room-for-joy-healing-decor.html

Max brought the article to school with him to show everyone. He didn't realize this would backfire on him. When he came home he complained (at length) about his lack of privacy during lunch today because EVERYONE "wanted to know what it was like to be a star". He asked, "Do these kids not know that even I, a star, need my me time?" This kid and his ego NEVER cease to amaze me!

Halloween Collage

2010-11-01T12:29:00.003-07:00

Just a few "trick-or-treat" pics, everyone pray Ellie doesn't kill me for this................

#74 - A Football Star

2010-10-31T16:26:00.006-07:00

One of the many things that life with Max has taught me, is that life is just one big coincidence after another. That and Max can make friends with anyone, anywhere. Especially at a baseball game!

At this year's last home series for the D-Backs Max spent most of the game turned around in order to entertain the spectators behind us. (Much to Michele's chagrin because he was convinced that Max was bothering more innocent victims.) In yet another one of Max's many coincidences it turned out that the two couples sitting behind us have "ties" to Max's life , one couple, who are huge baseball enthusiasts (how could Max NOT have loved them?), live right behind the fields where Max plays football in Glendale. The other couple actually know Max's football coach. Small world! Once again Max and his incredible zeal and desire to entertain lead us to meet more wonderful people.

Ron and Kim have been fabulous in coming out to see Max play. Kim is a wonderful photographer who took these pictures at Friday night's game, what a great job! Thanks Kim!

Checkout more of Kim's work at: http://rememberwhenaz.smugmug.com/.

Weekend Wrap-up

2010-10-10T17:52:00.003-07:00

Because in this house we live by the adage of “never a dull moment” our weekend kicked-off with a bang! After returning from Max’s first flag football game of the season (or at least his shortened season), we found Ellie at home obviously not feeling well. As the evening progressed, because an emergency just isn’t an emergency if it doesn’t happen after midnight on a weekend, Michele felt we needed to take her to the ER. By “we” I mean “me”, evidently as far as my husband is concerned I am the queen of the ER and the bypassing of all lines and wait times, after nine years with Max I must confess he’s right.

And thus began our “ER Drill” I quickly washed my face, brushed my teeth and put on my “ER sweats” (yes, I really do have clothes set aside for ER runs, those places are cold and germy and I’m not looking to win any beauty contests when I get there). I admit once we got there I may just have broken my own best time, we arrived at the ER around 1 am and Ellie was home and tucked into her own bed by 3, sleeping peacefully after a shot or two of morphine (who wouldn’t be?). Now I admit Ellie and her stomach virus are much easier to manage medically than Max would be with any of his myriad of ailments so I might not truly have any bragging rights on my personal best time on this one but a girl’s got to take whatever accolades she can get! I’m happy to report that Ellie is back to her old self: computer in one hand, phone in the other as she plans her Fall Break activities with friends. Love those Friday night fire-drills!

On the Max front, our plans for Hopkins continue to unfold. It has, unfortunately, been decided that Max will have to have surgery to biopsy his liver. We had been hoping and praying that his most recent labs which indicated an improvement in his elevate liver enzymes would put this procedure off but the GI doc feels they have been elevated for too long so we need a better idea of why. The worst part of the whole thing is that he honestly told us the results may simply come back as “unspecified changes” (in Max’s liver tissue), which is what most of Max’s test results indicate. We have come to accept Max’s “unspecified changes” but it just makes it so hard to put him through invasive testing to be told that there are abnormalities which cannot be treated because there is nothing specific to treat. The surgery will also extend our stay in Baltimore to be sure that Max has plenty of re-coup time before flying home.

Max knows we are staying longer than usual and even has an inkling as to why but he’s putting a positive spin on it all by assuming a longer stay means more DC cupcakes (one of his favorite TLC food shows) as provided by another of his adoring fans, my college roommate. Karen, I suggest you come through with his stash because everyone’s life will be miserable if there are no treats for Max!

Before closing I wanted to thank everyone who has helped us with this trip: the prayers and well-wishes are needed and much appreciated. We could not walk this journey with Max if it wasn’t for everyone who has stood beside us the whole way. Some we know and who have become family and those we don’t but we feel your love for Max all the same. Thank you.

It's a Date!

2010-10-05T09:22:00.002-07:00

We just found out our dates for Hopkins yesterday. Max's appointments will all be the week of 11/8, somethings are already scheduled, others are waiting on test results to decide what needs to be done. Either way the fun can officially begin: travel needs to be coordinated, lodging needs to be found, and the most fun of all.... authorizations for medical services need to be obtained (x 2 for both of Max's insurances)!

As much as we look forward to seeing these doctors and discussing how Max is doing, we just really hate this schlep across the country! More news to follow....

Note to Ann: If you ever ended up finding the Xanax you REALLY need to share!

Who the hell does this?

2010-10-01T11:12:00.003-07:00

I want to know what kind of "mother" (using the term very loosely) does this? It goes beyond scamming strangers but to make your child think he is critically ill? Most parents of children with serious, chronic medical issues struggle everyday to make their kids feel "normal". Why would someone want to make their child suffer like this? And all for $7,000.....

Michigan mom accused of shaving son's head, eyebrows to fake cancer arraigned on charges
10-01-2010 08:55 AM MST By COREY WILLIAMS, Associated Press Writer
ROSEVILLE, Mich. (Associated Press) --
A Detroit-area woman who authorities say told her 12-year-old son he had leukemia, shaved his head and eyebrows, and held a church fundraiser that pulled in more than $7,000 has made a brief court appearance.
Forty-seven year-old Carol Lynn Schnuphase (SCHNOO'-fays) of Warren was arraigned Friday in Roseville, Mich. Schnuphase faces two counts of false pretenses over $1,000 and one count of second-degree child abuse.
She was held on $100,000 bond and a preliminary hearing was set for Oct. 13.
Defense lawyer Dominic Greco says bond was set too high. He says Schnuphase has no money.
Authorities say the boy didn't have leukemia, and that Schnuphase drugged the boy's applesauce with opiates to make him appear lethargic.
The child is in foster care.