To All:
My updates have transformed into more of a journal as time has progressed, and I have shared our trials both medically and mentally. There is so much going on at St. Louis Children's Hospital (SLC), however, that I am going to return (for today at least) to my bullet points to highlight what's going on.
From our perspective, it looks like Phoenix Children's Hospital made a critical mistake in Ethan's care. They stopped feeding him by mouth months ago for valid reasons, but never tried to feed him again. Three months is a long developmental period at Ethan's age, so SLC thought they would simply try. They repeated the barium swallow study, and the aspiration wasn't showing, so they started feeding him by mouth again. As they stated here, "it may go horribly, but we are obligated to at least try." It didn't go horribly to say the least, and we have a boy eating by mouth again.
What is he eating you ask? Days 1 and 2 was mostly testing foods and textures, but we're on Day 3 now, and he has no restrictions. So, he's eating bananas, baby food, graham crackers, and blueberry muffin, and he's loving every minute of it!!! I cannot explain how high our spirits are with just this milestone -- we forgot how precious food stuck to a baby's face and hands is, and it's a reminder that we have missed many "standard" milestones and that they have come and gone. With all of that said, here's the rundown on the GI side of things:
1. He is off of central line lipids completely
2. They have reduced the caloric intake into his intestines (J tube feeding) and he has not had diarrhea since yesterday (first time in months).
3. They are reducing his TPN (blood stream) feedings gradually and he may be off of central line feeding altogether by early in the week.
4. His energy is VASTLY IMPROVED. He is pulling himself up in the crib, waving to everyone, babbling, and laughing. He still sleeps a lot, but he is coming around.
5. GI will be doing a barium CAT scan on Tuesday, because the intestines did look a bit distended and they want their own images to go off of.
6. He has two consecutive days of weight gain!!
SLC has divided his care into two areas: 1) Getting his gut working; and 2) Dealing with his caloric absorption (why he isn't growing). So the GI doctor, who we found out is also the best they've got, is getting his gut working. So now for point 2. . . .
In Phoenix we had a neurological doctor, here we have a team. No less than four neurologists have seen him in the past two days, and they did a much more thorough exam than has been done in the past. From that and his records, they want to run some tests. They told us that generally doctor's come up with a differential diagnosis first, that is, a list of potential problems, that hopefully gets narrowed to only one problem at the end. His list is still long, with rare disorders topping that list. Here's what's going on:
1. They took two blood tests, both with long names, to help determine absorption as well as screen for some mitochondrial issues.
2. Monday or Tuesday, he will likely get a spinal tap (and yes, general anesthesia) to test his spinal fluids.
3. Other assorted tests which will become more clear early next week.
So we have busy days and a busy week planned for Ethan. Luckily, he's eating again, so hopefully he'll have the stamina for it all.
The other boys are being very well taken care of by my sister, the only adult I know that can match their energy! I come home for work at the end of the weekend, and pray that everything goes well for my boys and wife while I'm away. I'm trying to make it back to St. Louis as I can, which is a balance of frequent flyer miles and work schedule. I'm hoping to get back on weekends as I am able.
I feel like there's more to share, but I will wrap it up for now . . . .
From the Humid Midwest and God Bless,
Matt
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