I just reread my last post. I was feeling pretty optimistic about M when I wrote it... thinking we were on the other side of all these GI problems, that he would slowly be able to start eating again, and life would get back to normal.
Unfortunately, things aren't happening quite that way...
If you'd rather
not read the details about the ups and downs of M's GI problems you'll probably want to skip this post... I would understand. I wouldn't want to read about it either...
Last week was a blur of appointments and phone conversations with doctors, getting tests done, and trying to keep Michael adequately fed and hydrated without triggering more problems.
A week ago Sunday he was seen in The Children's Hospital (TCH) ER, and they thought he looked and sounded (bowel sounds) great... and sent him home on a restricted diet.
Monday he was seen at our pediatrician's office by the doc who was covering for her while she was on vacation. He heard no bowel sounds at all.
Monday night M was very ill, vomiting 10-15 times within just a few hours.
Tuesday I made an appointment with the GI clinic at TCH... luckily they could squeeze him in the following day.
Wednesday we spent all day at TCH. M saw his orthopedist... He said said M's doing extremely well, except he's been overusing the new joint a bit and has some overgrown of bone where the femur was cut during surgery. He was also seen in the GI clinic by one of their "teams". They didn't hear much in the way of bowel sounds, and ordered a bunch of labs and an upper GI. I didn't have any answers when I finally left the hospital that afternoon, but I felt better... turning it over to the GI team would at least give M some continuity of care. Also on Weds. my sister from Kansas came for a visit...
Thursday.. back to the hospital for the upper GI (we had the labs done Weds. before we left the hospital). The doc who did it showed me how M's stomach was squeezing but not moving the barium along into his intestines. Without being able to effectively move what he eats and drinks along, it just sits in his belly until his belly gets full and it all comes back up.
Well... I guess that explains all the vomiting.
Thursday was also M's anniversary (of the day he came to our family). We always celebrate the kid's anniversaries with dinner out at their favorite restaurant... M wanted me to cook him dinner at home this year (which sounded like an excellent idea, since he was no closer to being able to eat than he had been a week before!), but wanted to go out to lunch. After endless talk and negotiation we decided on Mt Fuji (hibachi) because I knew he could probably digest the rice, and there would be no cheese, breading (on meat) or excessively fatty food. He ate his lunch and seemed ok.
Unfortunately he
wasn't ok... M threw up off and on through Thursday night and most of Friday. He was also unsettled and seemed headed towards instability on those days... probably since he'd been throwing up his psych meds pretty regularly.
I called the GI clinic Friday and talked to the nurses, they filled the main doc on the team in and he called me that evening. It sounded like he really didn't know what to do. There are only two meds that are used to treat this problem... but M can't take either one because they interact negatively with his clozaril. Dr S said there was nothing we could do this weekend, but he would start researching and see what he could figure out.
M was very sick Friday night and, for the first time, there was blood in his vomit.
My sister left Saturday morning... I felt bad that her visit had revolved so much around M's medical issues, but it had been very good to see her and I enjoyed having her company. After she left I went down to Vitamin Cottage and spent an hour talking to one of their "consultants" about herbs or other supplements that might help M. I left with $70. worth of herbs and spent the afternoon researching the various herbs in the supplements I bought before giving any of them to M. (Because of the meds he already takes and the side effects he has from them, there are many medications and supplements... even just herbs... that he shouldn't take.) He probably shouldn't take one of the supplements I bought, but the other two look ok. I started M on one of them Saturday afternoon...
Easter was a little different this year... M is still on a very restricted diet, and can have only extremely small (but frequent) portions of just a few foods. It was a hard day for M... he did well with all the food restrictions at home... but going to Grandma and Grandpa's, and not being able to eat what everyone else was, was very difficult for him.
So that brings us up to the present...
I'm sure I'll hear from the GI doc and the pediatrician today, and we have an appointment with the pdoc later in the week. Between the three of them, and me, we'll have to come up with a plan for M. Right now he's not eating enough, or the right kinds of foods, to maintain his weight or stay healthy... so someone is going to have to figure something out soon.