After yesterday's unscheduled visit to UNC (an hour drive both ways), I got home in enough time to help Mark with homework then it was off to soccer practice! After soccer practice, Rob and Erica took the boys to get dinner (drive-through at Chick-fil-A!) then home and I went to 2nd grade parent orientation at school. By the time I got home, Rob had already left for his hockey game (they are in the playoffs again - woo!). It was after 10 PM before I got Mark to sleep, and then Gantt woke up! Ended up just putting him in the bed with me and hitting the sack.
In clinic yesterday
Today we had 4 scheduled appointments at UNC - physical therapy, pulmonology, nutrition and gastroenterology. After the docs looked at Brett yesterday, they decided to do a throat swab and a nasal swab - to test for bacteria and for viruses. He was so listless and lethargic, he hardly even had the energy to protest much. They also ordered some blood tests, but before they did them, they made a courtesy call to Brett's gastroenterologist (GI doc) to see if she wanted to order any tests since they were already going to be drawing blood. That is one thing I like the most about this hospital staff - they always work together to care for the patients. Today we had his pulmonologists, GI, and nutritionist all in the same room, discussing Brett and what changes to make in his care regimen. It is a very effective way of doing things in a system (American healthcare) that oftentimes is the farthest thing from effective. Today Brett is feeling a bit better, but I still wouldn't be surprised if his viral panel shows that he does have a virus. If this were the case, we wouldn't treat it unless he developed some respiratory distress.
New formula - yay!
The blood tests came back great - they mainly checked white blood cell count (if this number was elevated it might suggest infection), CRP (inflammation), and IgG (immunoglobulin). The IgG is already falling since his last supplemental infusion. All the tests the GI doctor wanted were surprisingly good - showing that he is in fact absorbing his nutrition pretty well. Unfortunately this was the 5th visit with weight loss. However, he just finished his steroids last week, so much of the weight loss is due to losing the water weight the steroids made him retain. Since we haven't increased the feeds in quite a while (and before he started crawling and moving around so much all day, burning up calories), we decided to increase the rate of the 20 hour feed. Also, we will be switching him from Pregestimil infant formula to Peptamen Junior toddler formula. We hope he tolerates it well. For us, this means in a couple weeks we will be DONE mixing formula!!!! Yeah!!!
Look at that headnof hair. Bet his daddy is jealous.
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