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................