Waiting.....

There has been a lot of concern as of late that Max has been in congestive heart failure (it’s not as bad as it sounds it just means that the heart does not squeeze strongly enough causing the lungs to fill with fluid) so I have been spending more than my share of time with telephones surgically implanted in my ear talking to the folks at Johns Hopkins.

This concern has been based on a number of things, most importantly on the very wet cough Max has had for the last six weeks or so. Our pediatrician has put Max on courses of steroids and antibiotics and nothing seems to clear the cough so last week we had a chest x-ray to rule out allergies, respiratory infection. etc. When the chest x-ray showed no signs of anything as mundane as bronchitis or the like the cardiology team at Hopkins was even more worried that Max’s aortic valve was deteriorating further. Because we already had appointments set up in Tucson yesterday with a new cardiologist and Max’s local cardiac surgeon the plan was to get the echocardiogram done and overnight it to Hopkins for their evaluation.

So yesterday brought both good and bad news, it seems the echo didn’t look any worse than the one done back in March while we were in Baltimore, at least as far as the cardiologist could see. This takes the “fire drill” atmosphere out of the picture…..that is until Hopkins looks at it and then all bets are off. That’s the good news. The bad news is that in speaking to Dr. Teodori (Max’s original cardiac surgeon) the feeling is that this quick change in the leakage of Max’s aortic valve is a pretty serious medical finding. Now I know that this seems like a “no brainer” in that valve leakage is NEVER a good thing but in this case it’s even worse because Dr. T never, ever, ever says something is bad unless it’s really, really bad. I have looked to this man for nine years as the gauge by which I measure how much trouble we’re in, he’s always been dead on so hearing from him that he was pretty concerned has me spinning.

And so we sit and wait, wait for Hopkins to say all’s clear for now and then we wait another three months and start the process of echos and EKGs all over again until it is decided that we can wait no longer. Have I mentioned that I stink at waiting?

Max’s Big Day

I’ve decided that after several less than uplifting posts it’s time for some levity. On Saturday Max will be making his First Holy Communion and Confirmation. In the Catholic Church this is HUGE thing! Yet what is Max most excited about? Is it that he will be receiving Jesus through Communion or professing his faith or even that these ceremonies are seen by the Church as rites of passage? Oh no not Max, he’s just excited about his outfit. He will be wearing his first ever suit and tie! And we’re not talking about any old clip-on thing, nope this is a real silk tie imported from Italy. His Uncle Vito (Michele’s brother and Max’s Godfather) is brining it as a gift tonight when he arrives from Italy for the festivities. Max is very excited for his Uncle’s arrival but I’m starting to suspect that it may just be the tie he’s waiting for. You see Max picked out this tie all by himself at Christmas and he insists that he looks very, very handsome in it! He’s never at a loss for tooting his own horn!

In honor of this big event family members have been flying in all week and Max is just in seventh heaven! He loves having everyone around even amidst all the confusion that too many Italians in one room can cause. Although he hasn’t been feeling too well respiratory wise his broad smile hasn’t left his face all week and that’s put me in my own “seventh heaven”.

Plans

I have spent the last week trying to get organized. In a sense I am creating our game plan: the who, the what, and the where of our latest medical crisis. There is good and bad in this process. The good is it makes me feel in charge of a situation which is ultimately out of my control. The bad, well the bad is really pretty simple, with planning comes the realization that this is all real, Max needs another open-heart surgery. It still takes my breath away just writing or saying these words.

This is not how things were supposed to go. Eight years ago in the parking lot of a medical building I accepted that things would not go as they were supposed to when we first received the news that our baby was not healthy, he had a heart defect. Although I knew this changed everything I also knew (because we were told) that all this really meant was that Max would need an (one, singular) open-heart surgery to repair this defect. We were told that he would go on to be a “regular kid”, no worse for the wear. No one could have known that Max would be far more complicated than this. His one open-heart surgery has turned into 36 procedures, four (and soon to be five) of which are cardiac surgeries. How did this happen? Why am I still not used to this whole thing? The “how” is still being studied, Max has what they call in the medical world an “unspecified” syndrome. The “why” is because there is NO way to EVER get used to the fact that your child has to endure all of this, day after day, every single day of their lives.

So back to the planning…..I have spoken to several of the docs, the genetic specialist, and other medical staff at Hopkins who have cared for Max these last few years so I’m starting to see their care plan emerge and this allows for all of us to plan. I have spoken a few times to our local “cardiac hero”, Dr. Teodori who has been Max’s surgeon since birth. He has helped us get in touch with a pediatric cardiologist in Tucson who will manage Max’s cardiac care here at home. (If you consider Tucson, a city two hours from our house “ home”. But that’s a story for another post.) I have set up an appointment for Max with this new doctor so that we can introduce ourselves and get our plan in order with him. We will need this doctor to get up to speed quickly on Max, collaborate with Dr. Teodori, and most importantly with the surgeons and doctors at Hopkins who will eventually be doing the valve surgery.

In the few phone conversations I have had this last week with Dr. T I have also been hit hard with the cold reality that my son is truly a medical conundrum. His condition is so extremely rare that no one is able to figure him out. I unfortunately came to the conclusion that these doctors have always thought of Max as an unknown. No one could have known what his path would be and they still don’t know what it will be in the future. All of this has actually lead me to a very big, black hole – does this unknown include an unknown outcome? We know that Max long ago surpassed the one surgery, no worse for the wear phase but does this unknown factor mean that Max’s future is uncertain. I’m crying as I type this but I have started to wonder if my son’s doctors think all of these issues indicate an unfavorable outcome for Max. I can’t bring myself to type what I really mean by this but I will tell you that I voiced this concern to Michele the other night and I clearly knocked the wind right out of him and he asked me to never say it again. And so I won’t, but not just for him but for me. We can’t afford to waste precious time on negative thoughts when there’s so much planning to do for our son’s future.

Our Hero

Over the weekend Michele's brother sent us a video that he made for Max. Titled "I Have Something Great to Reveal" the video names Max as it's "Hero". We all know Max's opinion of himself so it was not strange that he asked me to post the video. For all you non-believers Max would like to make it clear....HE RULES!!

Enjoy and have a great week!

Happy Easter!

When it Rains it Pours

My mood this week has been awful, as you might expect. I'm finding it difficult to concentrate on anything and just about everything makes me fly into a fit of rage or a veil of tears. I feel incredibly angry, bitter, and frustrated. This is not like me. I admit I've never been "OK" with my little boy being chronically ill but I've never been bitter. I'm falling into the great abyss known as "poor- us-ville", I've never found myself in this dark, lonely place but I have heard about it from other moms. "Poor- us-ville" is no five-star resort, it's more of a Super 8 with a lot of Kleenex.


I'll snap out of it soon I'm sure, but not soon enough for the biggest victims of my rage. My family has had it with me, evidently I've been difficult to live with these last few days. Who knew? But I guess it was pretty obvious to all when I came home from work this evening and the garage door wouldn't open and the dishwasher wouldn't turn on. Both are DEAD. These events only sent me into a deeper tail-spin as I took the stack of today's dirty dishes and started to wash them by hand I found myself screaming at the innocent inhabitants of  "poor- us-ville" as if all my misery was their fault.


I think today has been a shining example of how worn down this life can make you. Certainly a few broken appliances are not cause enough to morph into a tyrannical monster but when you're already holding on to the end of your rope by a few tattered shreds any little thing seems like too much. Especially when you're in "poor- us-ville".