I found out as soon as I got there that Dear Nurse S. and the OT got together at Max' 07:30 feeding to see if they could find the best bottle/nipple/thickness combination to get Max eating better. After some hit & miss, they seemed to have a hit. He sucked down 60 - that's six-zero - MLs. Progress! I was there for the 15:30 feeding with Nurse S. (and no OT) and we had to figure out what the OT did that was successful. After 15 minutes of technique tweaking, we got him started. He drank 35 MLs. Not bad! Dr. R. has increased the bottle feedings to three per 24-hour period, which means he'll be getting a bottle every other feeding.
And speaking of eating, the whole au naturel feeding thing didn't go so well. He was actually pushing me away! Eh, my feelings aren't hurt. As long as he's eating I'm happy.
[...]
Okay, I'm back. I couldn't wait to watch the rest of it. Back to the updates...
I met with Dr. R, who is very pleased with Max' progress. He began to talk about what we'll need to do and decide in the next couple of weeks to get Max home. First we discussed Max' need for a GI doctor, to assist with his feeding issues. If he can't take all of his feedings from the bottle, we have a couple of choices: (1) a nasal feeding tube which Phoo and I (okay, most likely I) will have to insert, remove, reinsert, etc. (2) a "G" tube inserted into his stomach via surgery. Each has its pros and cons, and we'll have to weigh their risks vs. benefits. The surgeon has already been consulted if we all feel the G tube is a better option. Dr. R. said it was unlikely the anesthesiologist would get near Max again after the horrendous PDA surgery attempt.
Max will also have to meet a hematologist to deal with his platelets issue. Along with the hematologist, Max will need a cardiologist to monitor the PDA until the time he either needs surgery or if the PDA closes on its own. He'll get a minimum of one echocardiogram monthly, but will probably get more than one. Max is on oxygen now, and if he goes home with a tank and cannula, then he'll need a pulmonologist (SP?). He'll have to have his Lasix dosage tweaked etc., but such things are tangential considerations when we're dealing with eating and breathing. I asked Dr. R. if he was prepared to recommend in-home nursing care and he said "yes" especially because the NICU is so expensive and insurance companies actually save money when a child can go home with continued care.
So our *major* goals in the next 10-14 days are to get Max eating from a bottle (getting rid of the enteral feeding tube) and to get him off the oxygen. They're very lofty we know, and even if he's unable to accomplish either or both, he still MAY get to come home after two weeks. Either way, he should be moved to the suite by the end of the week -- it's where parents and their babies go when the babies' status is downgraded (meaning they need less care) and they're closer to going home. Max gets another blood gas tomorrow to monitor his CO2; he hasn't had one since last week.
More tomorrow...
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