A Visit from Hope

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....

...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

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....

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

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

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:

1. 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.
2. 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

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

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

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

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:

1. They discharged us. YAY!!
2. 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….

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!

"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

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”

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....

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

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

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

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

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.....

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

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

#74 - A Football Star

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

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!

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?

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.

Life at the Ranch

By my lack of updates you may have gotten the impression that life has been boring at the Marangella Ranch but I can assure you that is definitely NOT the case! We’ve had so much activity on so many fronts that I haven’t been able to clear my head enough to write anything.

On the medical front I have spoken to Max’s doctors at Hopkins regarding what our local doctors are saying about Max’s most recent issues. His cardiac geneticist feels that he should be seen by a pediatric neuro-ophthalmologist….a pediatric what? I have never in all my life heard of a neuro-ophthalmologist, let alone a pediatric one. The only thing I am certain about regarding this medical specialty is that there is no such animal in Phoenix! Only at Hopkins, so off we go! Hopefully I’ll hear back from the clinical coordinator tomorrow but because there are so many doctors to see and tests to be done it’s never really easy to schedule everything. Thank God they handle most of it for me! We do have one other very important appointment to set up. Max’s liver functions has been very high for the last several months so this afternoon I will take him for one more blood test to see how his numbers are trending. If the numbers continue to be high his GI doc at Hopkins will almost inevitably being doing a liver biopsy during our stay. They don’t like to do biopsies on an outpatient basis which means there is the possibility of time in the hospital so we’ll have to see what Max thinks about that, although I can guarantee a less than enthusiastic response.

On the school front we had Max’s IEP last week and as a result I’ve decided a couple of things: one, I hate IEPs, and two, I hate IEP standardize testing. This year they did a “full evaluation” of Max which means we had a two hour meeting to review their results. There were several areas where we disagreed with the results being presented to us and instead of a constructive discussion of the issues all the school team could offer us was a sarcastic, condescending, “If you like we can just take it out of the report.”, as if we are hysterical parents just trying to sweep crap under the rug. For everything we questioned this was the answer we were given. It was infuriating to be treated in such a manner! But it was even more infuriating that they were treating Max in such a manner! From here it only got worse……

When I got home with the paperwork and could finally read it carefully without someone talking over it I realized that they had list the following as “critical behavioral issues”:

• Child has an issue with “eating too much”
• Child has an issue with “excessive toileting”
• Child has an issue with falling

Are they kidding me? The child has half an intestine, eating too much and pooping too much come with the territory, it is a medical issue not a CRITICAL behavioral issue! As for falling down, this is a kid with nothing more than paperclips holding his sternum together, when was somebody going to tell me he has been falling? I took a day or two to calm down (Michele made me) before I called the school psychologist about this section of the report and guess what she said? “If you’d like I can just take it out of the report.” Why can no one see that children like Max have medical issues and not emotional, behavioral issues? Despite all he’s been through Max is one of the most well adjusted people I know. The standardize tests used by the public school system are not geared towards the chronically ill child. When I voiced this to the psychologist she said “but we all love Max….” as if that fixed the whole problem. I actually gave up trying to convince her of anything, thanked her, and hung up. Guess what came home with Max that evening? A new report with that section removed, problem solved….NOT! So in all my spare time I have decided to look into a better testing system for children like Max, just one more hobby to add to my list!

Enjoy the rest of your week all!

One Doctor Down, Two to Go

We took Max to the first of several doctors to discuss the changes we have been seeing in him as of late. This appointment was with the pediatric ophthalmologist. Because connective tissue disorders are often associated with rather severe ocular changes such as detached retinas and lens problems we were concerned about Max’s inability to “track” objects with both eyes. During the battery of tests with a less than pleasant tech Michele and I noticed that Max was having great difficulty reading the letters on the chart, so much so that I whispered to Michele that we might be receiving a prescription for a Seeing Eye dog. Obviously I was kidding but neither of us was kidding when we said simultaneously that if the doctor told us that Max needed any type of procedure or even glasses our trip to Baltimore would be confirmed then and there. The exam quickly progressed to the “color blind test”, he seemed to be failing that one too. I admit the whole thing seemed odd because Max has never shown any difficulty with his eyes of any type.

As soon as the “friendly” tech left the room I frantically picked up the first magazine I could grab and handed it to Max pointing to an article with the tiniest of print. Max began to read, “During the first months of life beast feeding your baby…” followed by “Mom, I see an “r” in this word so I know it’s not beast feeding but I’m not sure I know this word.” I had handed my son an article on breastfeeding! As quickly as I had given him the magazine I took it away, satisfied that he could read small print but waiting for the inevitable discussion of breasts and their use as a source of nutrition.

When the doctor came into the room he asked about Max’s current cardiac status and whether or not we were any closer to a definitive diagnosis on the connective tissue front. It always amazes me when doctors remember Max and his story but I guess it would be difficult to not remember Max, based both on his extremely unique personality and medical issues! He immediately told us that Max’s sight seems fine, there were no changes from last year’s exam. I thought, “Did this guy really see the results of the tech’s tests?” When we asked specifically about Max’s inability to focus on objects with both eyes he told us it was more of a neurological problem and not a problem with his eyes per se. Great, I now see another specialist appointment in our near future…..All in all I guess the news could have been worse, I say this tongue in cheek because we never know what the next doctor will say.

This part of my post is meant to entertain Ann. I received a call last night from a gentleman at APIPA (Max’s original State Medicaid insurance which covered all of his remaining medical costs not covered by our private insurance) regarding my recent issues with CRS (check out a few posts back about my follies with them) and their non-payment of Max’s medical claims. He gave me several pieces of very interesting information, evidently because Max has private insurance he DID NOT have to be enrolled in CRS, this is in fact what I always knew to be the case and had argued with CRS ad nauseam from the very beginning. I asked him if I should opt out of CRS and go back to just using APIPA, his response although diplomatic was quite telling, he suggested that it would be a good idea to do so in order to avoid all the issues we have experienced with CRS to date. This means we can go back to using our non-CRS doctors, Max’s claims being paid hence avoiding calls from collection agencies just to name a few…..Oh what fun I have on a daily basis…..

From 0 to 15 in Under 60 Seconds

Today is Ellie's 15th birthday, where did the time go?!

Ellie, we wish you a very Happy Birthday, may all your dreams come true (except a driver's permit), Love and Kisses -

Papa', Mamma and Max

The Unknown

This week Max has been very restless, he cries (something he almost never does), doesn’t sleep, and vacillates between not wanting us out of his site to giving me his first ever, “I really don’t like you Mom, I’m moving out!” (When I offered him a suitcase he did backtrack saying he thought he would just live in his room and never come out.) This is something I would expect to hear from my teenager but not my Max.

Coupled with this odd behavior Michele and I have been noticing physical changes in Max which seems to indicate some progression or change in whatever the hell Max’s undiagnosed condition is. Or does it mean nothing? Who knows? How much should we worry? Who knows? Because without a diagnosis, without a definable syndrome or disease we do not know what any physical change means for Max. No one knows, the doctors and researchers are not far along enough in their studies of Max to give us any type of “map to his future”.

Parenting a chronically ill child is extremely difficult; parenting a child with no diagnosis carries its own special pain. I am not the type of person who does well with the “unknown”. I like facts and resolution and being in control. We have none of that so every time Max looks or acts “not quite right” I spiral downward into a dark hole. After nine years I am physically and mentally exhausted from crawling out of this hole. But crawl out I must because there are doctors to e-mail and call, trips across the country for medical care to be pushed up by several months so we can be certain that we aren’t about to take a turn down some other winding, uncharted path.

Yes, I am tired but I look at Max and I know he needs me to not be tired, to not stay in my hole. He needs me to do what I do best…fight for him! And fight on we will.....

The Phone Call

A few nights ago I received a phone call from the school district. There’s something about seeing “Gilbert Unified Schools” on our Caller ID that just gives me a sinking feeling in the pit of my stomach. When I answered I realized it was the psychologist at Max’s school calling about this year’s IEP. Because she knows that I am not a big fan of the IEP process it must have taken a lot of courage to tell me that it has been three years since Max’s last “full evaluation” so she was calling to get my permission to test him again. AGAIN?!

She went on to say, “Who knows maybe Max has made progress since the first grade testing we did.” Really? “Maybe” he’s made progress? Is she kidding me? Has she seen Max since first grade? Heck, has she ever seen Max? Why is the entire school system so certain that Max is an academic train wreck? He reads at a Middle School level, knows more geography and history than any child his age, speaks two languages and yet the “experts” in child development are amazed when we tell them to push Max academically. Let’s not forget that last year’s teacher had the nerve to ask me what I would do when Max could no longer handle the work. She wanted to know if I would be willing to accept that. For the first time in my life I was absolutely speechless, this woman was serious!

It is the IEP “dance” that I hate most about the beginning of the new school year. Being the control freak that I am I really dislike having others decide what Max’s education should look like. I have never let the doctor’s dictate his medical treatment without our input, why would I let the school system dictate his education plan?

New Beginnings

And so today another school year begun. For those of you who follow along with us I will proudly let you know that no child was sent off on the wrong school bus.....mostly because Ellie was smart enough to make me stay home.....

As you can see Max was excited to get back to his kingdom where his loyal subjects awaited him. His only problem this year will be learning that it isn't as easy to charm a "boy teacher" as it is a "girl teacher". Especially when this "boy teacher" is married to your first grade "girl teacher" which means he's already been exposed to all of Max's usual tricks. Good luck Max, good luck Mr. Doutrich!

And so it begins.....

Back to School Musings

Tomorrow is the first day of school. What this means for the kids is the excitement of a new backpack, getting the teacher they really, really wanted, and seeing their friends after a long, hot summer. What it means for me is many hours spent school supply shopping yet I have only purchased a fraction of the supplies on the lists received at “Back to School” night. I’m not sure but I think the public school system receives kickbacks from Staples, Office Max, and Target. If they don’t, they should. I have filled out the requisite pages and pages of “new school year” paperwork.

Both of these activities have lead me to one very important suggestion to the School Board – please, please, please DO NOT hold “Back to School Night” the evening before school starts. Do you have any idea what the Target parking lot looks like right after this event? Crazed mothers clutching the supply list they received just moments before makes the day after Thanksgiving shopping rush look like a stroll in the park. These are women on a mission, often with whining children in tow begging for something that isn’t even on “The List”, how utterly dare they?! Furthermore, do these people have any idea how long it takes to fill out page after page of forms (times 2 for two kids – heaven help larger families!)?

So because I’m never shy about offering my opinion up I’m going to pop the following note into the school’s suggestion box:

Dear Mr. School Board Person-

Please allow me to introduce myself. I am the mother of two students in your school district. I would like to make you aware of a few pieces of information you might find valuable when scheduling next year’s back to school events. This last minute practice of yours is killing innocent mothers! Is it actually possible for you to be even less organized than I am?

Please understand that although I love a good fight over the last package of index cards in the school supply aisle as much as the next mom I feel a line must be drawn at the tug-o-war I witnessed over the last Mario-Cart thermos.

Also, I know you think our children should be helping us fill out their own forms but I must ask you, have you ever seen their handwriting? Perhaps this leads to another point, whatever happened to teaching penmanship? Never mind I’ll leave that for another suggestion box entry….

Sincerely,

A Mom on the Verge of a Nervous Breakdown


Happy School Year All!

Last Day of Freedom

After summers of casts, open-heart surgeries and more, Max finally swims!!!

Is it really over? Do I have to go to school tomorrow?

Cannonball!!

Cathching those last rays...

A Max Chuckle

I’ve only heard this story second hand from Michele but none of it truly surprises me.

On the way home from summer school last week Ellie was telling Michele that her friends’ parents let them go to “raves” (“the so and so parents let them….” is the topic for a whole other post). Max quickly chimed in to tell his sister, “Ellie you don’t want to go to raves because people are there just to do drugs and drink alcohol and the police come!” Michele was a bit disconcerted to hear just how much Max knows about these gatherings considering his tender age of nine but there was nothing to prepare him for Max’s next statement, “Besides boys just go to raves to pick up hot chickens.”

Michele, unaware that raves include “take-out” dinner orders from KFC, had to think about this for a moment or two when he realized that what Max meant to say was that boys are there looking for “hot chicks” not “hot chickens”. When Michele tried to correct him Max responded, “What do you know about boys and hot chicks?” By this point Michele didn’t know if he should laugh or be insulted!

Reality

With baseball season in full swing (no pun intended) Max has been all-consumed with going to as many games as possible, watching the ones he can’t get to on TV, and making us play mini-games in the backyard (as the temps here have hovered around 105 and up this has not been the highlight of our day) so that he can practice both infield and outfield catching as well as perfect his stolen base slide. Because of all this Max has started to question our logic on why being a coach is so much better than being a player. Obviously Michele and I have always pushed “the coach” thing because we know that there’s no way Max will ever be able to play any sport competitively. Unfortunately, as he sees his sister prepare for her second year of swim team, as he sees other children at the Park practicing various sports, he is starting to accept the reality of his situation – he will never be what he so desperately wants to be --- a famous baseball player. He gets angry at us for saying that being a coach is so much more important than being a star player, he know we’re lying to protect his feelings and at nine it just doesn’t fly like it did when he was five or six years old.

For a chronically ill child life is all about coming to terms with reality, in most cases this comes little by little as they discover the limits their bodies impose on them. This gets more and more difficult as they get older because there is so much more they can’t do: sports, sleepovers or going to grandma’s house because there are way too many meds that you need to take, many amusement rides are off limits, and the list grows. Most of these limits Max has come to accept easily and he copes by minimizing his desire to do them: he doesn’t want to sleep anywhere other than in his own room (or my bed but that’s a different story), he wouldn’t want to go too far away without us because he knows he’d get homesick, he’s not interested in roller coasters because they are way too scary…..he minimizes all of them except the inability to play sports like he wants to.

As his parents we are so proud of how he copes with, and even thrives in, his reality but at the same time it is heartbreaking to watch him come to terms with it all. When he was a baby he didn’t realize that not walking until 20 months, eating through a tube in your belly, and taking a dozen or so meds is not the norm. He didn’t realize that his reality was different, because we didn’t let him see this but now as he grows and matures there’s really no hiding the fact that he’s different from his peers. So as his parents we are dealing with our own new reality of helping Max understand that he is not defined by what he can’t do but rather what he can do because he excels at all of it.

Another Day, Another Battle

The last few weeks have been maddening, so much so that I have been unable to write anything meaningful or at the very least something that didn’t make me seem like the candidate for anger management classes that I am.

Many of you will find this hard to believe but our most recent “issues” have been with the state funded health insurance that Max carries due to his chronic medical conditions. I know hard to believe, huh? Health insurance companies are difficult enough to deal with let alone those run by the State! It all started just before we left for Baltimore last March when I received a “congratulatory” letter telling me that my application for Max to be enrolled in the State’s clinic based healthcare had been approved. Application, what application? I have spent the last nine years fighting tooth and nail to keep my son OUT of this program, how the hell did this happen?

Seething, I got on the phone thinking it would be easy to get us out of this mess because Max has primary private insurance which means he does not have to be subjected to the hell known as the Children's Rehabilitative Services (CRS) clinic. Surely, I could get someone to see the logic in this and disenroll him. But instead I was told that, “Based on your son’s cardiac defects he must be enrolled in CRS to receive cardiac care.” To which I replied, “Really? How was he able to receive cardiac care, which you paid for I might add, for the last nine years, including no less than four cardiac surgeries? Was no one able to figure out his diagnosis then?” After much discussion the nurse case manager started to see the logic in my argument and told me not to worry whenever the State received a claim for Max’s cardiac care they would simply pay it out of the CRS budget, there was no need for him to come to clinic. I smugly hung up the phone feeling like I had saved the day…..once again!

This power trip was to be a short one. Not long after my first discussion with CRS I started to receive multiple phone calls from various nurse case managers asking me for all types of information regarding Max, his diagnoses, care, etc. At this point I’m thinking, can’t you people read your own records? Don’t you know all of this already? Why are you asking me questions whose answers must be in Max’s file? I’ve seen this file it’s HUGE. Can’t you people read (by this point I had serious doubts)? However, I never took into account that the State’s filing system leaves a lot to be desired, this became crystal clear when I received another phone call asking me why my son had received no cardiac care since December 2006. Are these people kidding? In this timeframe he has had one open-heart surgery, two cardiac CTs, four cardiac MRIs, enough echocardiograms to fill a DVD library and this woman is asking me why my cardiac kiddo hasn’t had care? Holding my breath and weighing my words (not a talent that comes easily to me) I suggested to this woman that if I had not sought cardiac care for my child in nearly four years I would hope that she would report me to Child Protective Services for neglect! I think my sarcasm was lost on this one but oh well!

Thinking the interrogations had ended I never expected the next call I got. This time they were calling to intimidate me, either I used the CRS clinic for ALL of Max’s care (remember, they originally told me that they would only be handling his cardiac care) or they would not pay and I would be solely responsible for all medical bills. Really? Have these people seen my bank account? There’s NO WAY that’s going to happen. We have worked very hard since Max’s birth to assemble the best team of doctors that we could, if they think I’m going to give this up to see the idiots they refer to as doctors they have another thing coming. In fact, I suggested that if they insist I use their cardiologist, the very same doctor that nearly killed my son before his last open-heart surgery because he dragged his feet for so long, I would be more than happy to bring a malpractice suit up against the whole lot of them. It was strange how quickly they changed their tune. As of now, I’ve set the situation straight…. again, but something tells me not to hold my breath, someone will call me next week with some other ludicrous story.

So now do you understand the lack of blog posts? Have a great weekend all!

Then and Now....What a Difference Nine Years and an Incredible Cardiac Surgeon Make!

God bless you Max, you are our hero!

Wolrd Cup 2010

Forza Italia!!