Day 5

Robbie continues to improve his eating.

Ironically, that is actually keeping us in the hospital.
If he weren't making progress, they would send us home with an NG tube for 2 weeks and if things still didn't improve, they'd schedule surgery for a G tube.

Instead, they're trying to slowly increase his intake volumes to approach a normal level which might mean we get to go home without a tube.

I'm not sure I have full belief it'll happen. I think I'm beaten down my months of food wars, but I would LOVE to be wrong. Either way things have definitely improved.

Last night he took as much as 64cc by mouth (the goal currently being 75) and short of one bad feed today, he's taken 50-55 all day.

I think the plan right now is to leave him at 75 for another day, then try to up him to 90 and go from there.

If we can get him to 90, that leaves enough leeway that if he doesn't take that amount at every feeding, but at some, he can still consume enough calories to thrive.

We had a bit of a scare the other night where his heart rate was very low. He kept setting the alarms off. And it kept coming back "irregular heartbeat."

After a day or so of being dismissed, we finally had a great nurse who listened and could hear the irregularity and took it to the resident pediatrician. Her theory was actually that his NG tube was stimulating his Vagus nerve and causing the irregularity.

It made sense because it would get better if you positioned him a little differently, but I insisted on an EKG anyway. It was normal. *phew*

We've had a good run of nurses the last couple of days which makes for a MUCH more pleasant hospital stay. Our day nurse the last two days, in particular, was lovely. She was very attentive, knowledgable and seemed to love Robbie. What more could a mom ask for?

That being said, I'm truly sick of hospital life. Robbie eats every 3 hours but gets his vitals taken every 4. Of course, it always seems his vitals are due just as he gets to sleep.

Just now I'd finally gotten him settled only to have to get him back up to weigh him, and get all his numbers. I then got him back to sleep and now it's time for him to eat.

I also miss my bed and TiVo and Robbie's toys and swing. The hospital has provided some things and we have brought others for him, but it's not the same as being at home. We'll all be glad to get back home.

Keep us in your prayers so that can happen soon.

Off to feed the kiddo...


--Trish