Day 3

His TSH was normal.

His resting heart rate continues to be low. Currently it's about 78. I am trying to accept that it could be okay, but then occasionally the monitor dings saying "irregular heartrate." and I feel like puking again.

I'll be pushing for more answers tomorrow.

Dr. GI acted like I was a crackhead for being concerned. She also didn't want to order the TSH that Dr. P wanted. In the end, she did it, though.

On the eating front- they were prepared to send us home with the NG tube. I balked at having to do it at home, though.

Though honestly, I'm probably going to have to. But I'm NOT happy about it. If you could see him freak out when they even mess with it, you'd understand.

We compromised. Right now the plan is to keep him for the weekend and see if things continues to improve. (Dr. GI said she was "encouraged" because he's been taking closer to 45ml at a feed instead of the 15 he was at before.) If still not taking full feeds, he goes home with the NG tube for 2 weeks.

If after 2 weeks he's still not taking full feeds- G tube surgery.

I asked about an endoscopy to see if there is something else going on in his stomach. I specifically asked about scar tissue from his multiple surgeries before. She said they don't see adhesions in children as young as him. Ditto for things like celiac disease.

I don't get the impression she cares a whole lot more for me than I do her. We're clearly not each other's kind of people. But she does come highly recommended by both multiple medical professionals and other parents.

The trouble with getting a 2nd opinion right now is that she's literally the only pedi GI doc on staff here. Though if my pedi is in tomorrow morning again, I might ask about seeing the pedi GI at her home hospital before we go through surgery.

I did ask if they could scope him during the beginning of the surgery and just make sure they don't see anything. She said we could discuss that with surgery if the time comes.

I think the surgeon would agree to that. He did the same thing during Robbie's first round of surgeries to check for inguinal hernias. Just took a peek with the scope, saw them and fixed them while he was there.

That would minimize the times he needs to be anesthetised as well. Seems like the best of both worlds.

And I really like the surgeon who worked on him before. A few of the nurses in the NICU told me that if their kid needed surgery and he wasn't on staff here, they'd follow him to wherever he was to have them do it. And that was our experience with him as well. So that's comforting.

Other than that, not much else going on. (As though that isn't enough.) OT was in for the 2nd evaluation while he was more awake. No real changes. I did get a pretty good pep talk from the OT. Basically that I'd definitely tried everything. She liked some of the tricks I used to get him to eat a little more and generally was very positive about both his skills and mine. It did make me feel good. I guess there is a little part of me that keeps waiting for some professional to say "You mean you haven't tried __________? Well no wonder he won't eat, you dimwit!" Mommy guilt, I suppose.


David took the day off today and spent it with us. I think my phone call at 6:30 this morning saying "his heart rate isn't right" scared him and he said fuck work and came to spend the day with his family.

it was nice having him here. He even fed Robbie one of his feedings this afternoon. (That hasn't happened in AGES.) After lending moral support through it, I promptly passed out and took a 2 1/2 hour nap. God I needed it. I was punch drunk.

So we do have an end in sight. A couple more days here at the maximum.

As long as we get this heart rate thing settled, I think we'll be okay.

I don't love the idea of the G tube, but there is a big part of me that really thinks that's where we're going to end up. It'll be just like everything else- A new normal.

--Trish