July 5 - I'm Baaaack

06:57 - Has it been a thousand years since I last posted? It feels like it. I can't believe how long it has been, given all of my free time.

Well, Our Boy is doing fine. His platelets remain at or around 26K (objectively sucky, but stable for Max, which is a good thing). His liver function tests from Monday were not bad -- a couple of numbers slightly up, a couple slightly down. His eating hasn't improved much. We're trying to give him a bottle at least once a day, if for no other reason than to keep "suck swallow breathe" as one of his motor skills. There's some, but not a lot, of hope that he'll improve his stamina and be able to eat for more than 20 minutes and more than 25-30 MLs in one sitting. He tries so hard and he really seems to enjoy it, but he poops out and becomes really disorganized in his effort. All this means that he's coming home with a feeding tube. And we're NOT attempting G-tube surgery at this time. Every neonatologist who knows Max, as well as the surgeons who performed the failed PDA ligation, voiced strong opinions about waiting, and that was good enough for us.

Max started his daily physical therapy sessions this week and is already showing improvement. There's a lot of back stretching and curling, sitting up, and neck control exercises. Phoo got to spend the day at the hospital yesterday and observed the OT working with Max for the first time.

When I was at the hospital yesterday, I noticed that Max' cannula was completely out of his nose, yet he was sat-ing at 98% O2. The RT came in and I mentioned it to her. She said Max is on hardly any oxygen flow at all, so I said "why don't we turn off his oxygen and see what happens," thinking that maybe he doesn't need it anymore. Thus began our controlled experiment. She turned off his oxygen and stood in front of the monitor. 98...... 97......96..... steadily down to 88 over several minutes. Never mind! She said it may not look like his cannula is doing anything for him, but it's just that little puff that keeps him afloat. She's going to note his chart with our test and see if we can repeat it a couple of more times before Max comes home.

And speaking of COMING HOME:

The BIG news is that Dr. G. wants to send him home next week. After our initial excitement, reality set in about how much we have to learn in order to accomplish that goal:

(1) Become an NG tube insertion/removal expert. This scares the hell out of me, by the way.
(2) Learn all of Max' PT exercises.
(3) Learn how to use the feeding pump for his overnight continuous feeds.
(4) Learn Max' oxygen monitoring system.
(5) Meet with Max' team of doctors: cardiologist, pulmonologist, GI doctor, hematologist, and developmental pediatrician
(6) Hire a night nurse.
(7) Coordinate w/ Social Worker to get Max' insurance / Medicaid situation secured.

I think that's pretty much it for right now, as far as our tasks go. Once we got over the shock of Max' impending arrival, we came up with two weeks as being a reasonable homeward bound timeframe. It so weird to think he'll be HOME, with US. Dr. G. reiterated that Max is still a very sick baby, but chronic enough to be outside of the NICU's expertise scope. He really believes Max will thrive much better at home, and I agree with him to some extent, but we have had great peace of mind knowing that if something goes wrong, a staff of experts can be at his bedside in seconds. It feels like coming home leaves Max without a safety net, but I look at how much actual *care* he's getting at the hospital, and it's really no more than what I could be giving him at home (with a lot of training).

So what happens this week: Chest and abdominal x-ray today. LFTs on Monday. CBCs conducted Monday and Friday only (platelet count, hematocrit level etc.) More PT, more bottle feeding.