Pics Above: Liam happy to be in his big boy chair, 18 month pediatric appointment results- 32.5 inches, 50%, 26 lbs 12 oz, 75%. Typical chart.
Liam with JP and Reilly- two of his CHOP friends, survivors and miracles. Reilly was recently removed from the heart transplant list because her heart has begun to heal itself. We were there to celebrate JP's 2nd birthday!
Its been awhile since we've had medical updates but this past Wednesday, the three of us headed down to CHOP for a day full of cardiac tests and doctor visits. I have been nervous about this for a while- it was a big test, if he looked good, we would have a year between visits and we would be given an outlook on future surgeries. The word is possibly 20 years or more down the line. If the heart didn't look so good, we'd be visiting more often and discussing treatment (ie open heart surgery) plans.
I was also nervous because Liam is feisty- seriously, that NICU doctor who described our future as having a docile and nonspeaking son can babysit for a few hours and enjoy choking on his words as he stops the Troublemaker from bringing down the place. Anyway, having a baby lay down through an echo was hard but a kid who only wants to crawl, cruise, move constantly during his naptime...sigh.
Remarkably, his biggest fuss was when getting his blood pressure taken. He actually sat still for the doctor who examined him, did well for the EKG and then off to a 50 minute echo where he had to lay on his back and not move. Let me tell you, I was a dancing monkey. Alex restrained him because Liam was mostly fascinated by the equipment and wanted to give himself the echo. I danced, I signed songs, I sang, I blew bubbles. That poor technician. Oy.
After all the testing, we headed back to see the doctor. The first words out of her mouth- "Well...Liam's right ventricle is definitely enlarged." Right about there, my stomach dropped and it took everything inside of me to look her in the eyes without crying. But I also remembered the pressures of a tet heart cause the ventricle to be enlarged and some kids hold up well with this. She then spoke again and I was able to breathe. She told us it is a concern but not one for now, or even in the next year. Most tet kids have this and live for a few years before going into heart failure. Liam is healthy enough that he doesn't need to be seen for a year, which is positive. She wasn't going to worry and we were a few years at least from beginning the process of next steps. We are not looking at the 20 year outlook though, much closer to 10 if his heart stayed within this range.
Because he was squirmy, the technician didn't get the best pressure readings and pictures so when he gets closer to 3 or 4, she is going to begin MRIs. He will need to go under general anesthesia for this, which we don't like but it does mean she will get the best picture possible of his heart which we need. At the earliest, he will hopefully be at least 10 or so before his next surgery. It would entail replacing his pulmonary valve, which right now is typically done with animal tissue versus human tissue, which he received through organ donation last year.
The good news for us is by this time, the odds are in our favor of Liam NOT needing an open heart surgery and instead, being able to replace the valve with a cardiac catherization. Europe is doing it, some hospitals in the US are experimenting with it now, Johns Hopkins Children's has had success. While still a dangerous procedure, he would not need bypass time, no invasive surgery, breaking the ribs, etc. It would be a vein insertion in the groin and the repair would go on the end of a stent. Liam had this procedure last year when they couldn't get a good picture of what was happening in his heart and it was discovered his patch had dehisced. We know he can handle this procedure, he did at his very sickest already. Hey Bill Clinton did it, Liam's got this. It gives us hope that even though he will need another surgery, modern medicine can make it a much easier process next time. How lucky we are that he is born now- its likely he wouldn't have survived ten years ago.
Here is a great article on how another kid had this, and was at this hs graduation within 48 hours-
http://www.hopkinschildrens.org/a-less-invasive-pulmonary-valve-repair.aspx
Sometimes I read this back and think to myself- when did I become this calm and positive outlook person? How can I be calm when speaking about my son's heart being taken out of his chest and repaired, yet again? I have no idea how this happened but it has. And it is what it is. What a different life than we imagined when we first got pregnant and discussed Senator Kuhns future. Hey who knows? Maybe there will be a district who is able to recognize how amazing a kid like Liam is and what they can learn from him.
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