Well the news wasn't what we wanted to hear- all three of his labs came back slightly outside of the normal range. Of the three, his hemoglobin was already re-tested back here in VA and its now back to normal but we need to keep him better hydrated with additional water/juice throughout the day because once this guy falls asleep at night, he doesn't wake up!
His thyroid function is slightly hypothyroidism and the attending endocrinologist at CHOP said if he was 3 or 10, she wouldn't recommend medicine because the number is just slightly above (range goes to 3.8 and Liam was a 4.4) but because the first two years are all about neurological development and this could effect it, she wants to play it conservative and put him on a small dose of Synthroid daily until he is 2. Sigh.
And then the worst news was his immune labs- he went down in the majority of categories which is surprising. We were expecting a slight increase since more time has lapsed since the surgery and the chest drainage. His numbers are back down from where he was in May. The most concerning news is that they just don't know why. The immunologist did have some questions for our cardiology team and we scheduled an appointment for September 23. In the meantime, he is going on Bactrim which helps fight against infections. The concern is a common cold could spell pneumonia for him and he needs protection against it.
For anyone who knows me pretty well, waiting until September 23 was just not going to work so instead, I reached out to our CHOP Cardiology team asap and got some answers to the puzzle. The one big question was if during the surgery his thymus gland was at all scraped or touched since this makes and houses your antibodies. Well...it was completely removed! We hope this will provide more guidance in how to treat his immune system. The good news all the other questions were no's and less to worry about. CHOP is going to do a study on Liam's blood cells and see how his cells function and reproduce. Their team is determined to get a health treatment plan in place before winter really comes along with all the sickness.
In the meantime, I have been a part of this terrific Mom's playgroup and Liam especially has really enjoyed the social and play aspect but I am going to have to cut back on the interactive stuff for him right now until we know what is going on with his health. I am going to try to find a middle ground for us to do some things and not others. He won't be happy but he will be healthy, which is what we want.
Here are some more recent pictures of our adventures:
Just as an FYI- I was on Bactrim for much of my childhood and am now allergic to all sulfa medications (the category Bactrim is in). It was the right thing to do for me at the time, to get me through what I needed to get through, but just be aware if he's on it for a few years, this could happen. (I assume it could happen with pretty much any antibiotic, but I only know for sure because of my own experience with Bactrim.)
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