Wednesday, July 25, 2012

Somehow it's Wednesday....

Today has definitely been one of our best days here at Children's. That's in relative terms, obviously. But James has perked considerably and while not eating a ton, is doing worlds better.

Eve came and had breakfast with us this morning!

So happy to pet his sister. :)

Trying to be as normal as, whatever.

So that's today. Here's the recap since Sunday:

Sunday continued to suck just a lot. That trickled into Monday which definitely sucked more. He went in for the procedures at around 1 and was done around 3ish. Took a little longer than we thought, so I was nervous. What happened is that they have to put air into the intestinal tract during scoping so they can see. Sometimes due to either inflammation or anesthesia, the air gets stuck. The danger here is that everything gets distended, the intestinal walls are thinner, and you risk perforation. So Dr Kooros tried suctioning and doing all sorts of things, but the decision was made to not continue with the colonoscopy. By this time the endoscopy was done and the PICC line was placed. So Tom and I go into a consult room while James was being extubated (there's a word you just never want to hear about your child, FYI) and they start explaining everything that happened, but that he was fine. However, an NG (nasal gastric tube--down nose into stomach) tube had to be placed to allow air to escape until gut started to move. I think Tom's initial reaction to that was absolutely devastated, as those things are complete torture for anyone, let alone someone with an oral aversion and SPD. I got to devastated over the next 19 hours of misery, but initially I was so relieved he was okay. I was seriously scared about him having all this done. Risk of complications are so much higher when you are dealing with malnutrition and I was just terrified. So when the doctors walked in talking about complications, I've never been so afraid. At that point, the NG was just not the worst thing in the world. But, tell that to James. It was awful. Same as two years ago, he basically did not speak or make eye contact until noon the next day when it came out. We spent hours just reading books and trying to make him comfortable, but there just wasn't anything we could do. When it finally came out, we headed to the lab for a sweat test for cystic fibrosis. He has had this done before, but they wanted a repeat test with their more sophisticated equipment and lab. Apparently CF can present only with GI issues in rare cases. The last time he had this done it was basically a piece of plastic taped to his arm with a sponge in it that collects sweat. Then you wait til there's enough sweat. So I'd been telling him all morning we were just going to get a sticker. Well shit if they didn't hook his inner arms up to these medieval electrodes to stimulate the sweat and then wrap him in plastic. On both arms. I think it hurt like a bitch. I felt terrible, cause Lord knows this kid remembers EVERYTHING that is said. Terrifying prospect for our future. Anyway, he came back and slept after some playtime and had a little dinner and slept pretty well overnight. Tom flew back to VA this morning which, um, sucks (theme?), but James woke up a new man! He was hungry and talkative and goofy and his color is 1000 times better. We had to change the dressing on his PICC line, which is the equivalent of cutting off puppies' tails, but otherwise the day was trauma free. We also got moved again to the real GI floor, as they were cleaning up after construction. Bigger room, bigger window, flat screen, play room, and a lovely view of my parents condo building. So close, yet so far away!

So here is what we know so far:

He definitely does not have CF, thank God (it's true we really want a diagnosis, but that's one we really didn't want).
He definitely does have visible and significant inflammation of the small bowel.
Preliminary tests are inconclusive, which we sort of knew they would be, though there is no particular evidence of Crohns, which is good too cause that disease no bueno.
I do not look pretty without makeup.
My husband is a saint. Not a patient one, but a saint nonetheless.

Waiting on the more detailed and specialized biopsy results and some more extensive celiac testing as well. We will hopefully have a plan by the end of this week. My goal is to at least know what's going on by my birthday next week.

One more thing to add to 'things we know':
My goals don't mean a whole lot to these people.

Over and out.

1 comment:

  1. I read your blog and think as hard as it is here with Em's Aspergers, learning diffuculties and SPD, your's is way harder and you deserve a medal

    Keep being strong...and when you are home and we are settled into our new house you will have to catch up