Day 111 June 5th
I received a call from Tori (his primary nurse) this early afternoon about Ryker’s update, before we had a chance to make it in..
Ryker has his feeding tube back in.. I guess the last 6 days, he has continued to lose weight, having large throw ups after feeds, and having a hard time meeting his minimums every shift. They said he gave it an incredible effort though. Many babies will dramatically drop after a day or two of only being bottle fed, and he managed to have continuous highs and lows in a wave like pattern. It sounds like he’s close, but they want to take the pressure off of him for a little bit longer and just feed him the remainder of what he doesn’t take by bottle through his NG tube. They also upped his intake from 69ml’s to 80ml’s, although most of his feeds he took by bottle the last week has been in the range of 50-60mls. He did not tolerate the increased amount by any means.. The first two feeds, he’d throw back up 30+mls.. So they decreased it down to 70ml’s in hopes he tolerates it better.. There is talk about possibly changing his fortifier from 24 calories to 26 calories to allow him to still get the proper calorie intake without as much volume.. The other thing I’ve brought up in the recent days is the fortifier they had switched him to. I noticed within the first 12 hours of the switch, he started throwing up larger quantities of his feeds. However, since they had made a lot of changes in a 24 hour period last week (lowered oxygen, changed fortifier, removed his feeding tube, vaccines, and ROP exam), they want to do a slower process of elimination to narrow in what is causing his issues..
They’ve bumped his swallow study to tomorrow afternoon and decided to do a GI study as well, since it’s part of the same process with longer monitoring. They will feed him a colored liquid and do a series of imaging to follow how the fluid flows down to his stomach and through his GI track. They’ll be confirming whether or not he is aspirating (breathing in some of his milk) and confirm his GI track is formed appropriately. They aren’t overly concerned at this point though. They did a chest Xray and a Blood gas as well, which both looked incredible. Also things like not being able to lower his oxygen levels, and constantly projectile vomiting would be huge signs of something wrong. However, they want to cross their T’s and dot their I’s and confirm his bottle feeds aren’t a hindering factor in his issues with keeping food down and not being able to keep his saturation levels.
As far as the pulmonary hypertension goes. It sounds like it’s a mild case, but definitely a factor as to why he’s dropping his sats so fast when they remove his oxygen. They said he should eventually grow out of it, but in order to go home, they’d like him to hold his saturation levels at least a good 5-10 minutes, rather than the 2-3 he’s at currently. I’m not sure what the plan is yet to get him to that point.. Hoping after the swallow and GI study results, we can get a clearer game plan of his future.
I think they may have dangled the possibility of discharge in front of us a tad too early.. 2 steps forward, one step back. We’ll get there though..