a good day

Mondays are my long day at the hospital. Right now it is unrealistic for me to be able to be at the hospital for rounds every day of the week, but Mondays are especially important so that I can start the week on the same page as the doctors and prepare myself for what the week MAY hold. Many things are dependent, obviously, on how stable he is. He was pretty stable from a heart standpoint over the weekend (what an answer to prayer!) Even our doctor had to admit to the fact that God answers prayer. So many people are praying for our baby to an amazingly powerful God who is VERY interested in bringing Himself glory. How amazing that He has chosen our little boy to help in that cause! Because he did so well over the weekend, they are going to hold out with putting in another central line. The main reason for wanting that was to be able to administer meds on an emergency basis if his heart continued to have rates in the 270-300/min range. Right now his only access is another scalp IV. They have begun to wean him from Vapotherm and will administer a sleep study when he is successfully off Vapotherm (from what I gathered, he needs to be completely off Vapotherm to get an accurate analysis with the sleep study). Also in the near future oral feeds will be attempted. If they prove to be unsuccessful, then a gastrostomy tube (G-tube) will be next. Not sure how they will timeline the sleep study with the G-tube. He will need to be reintubated for surgery, so we'll see how that goes. Those are the main things for this week.

After the NICU docs rounded, I started helping out with Chi's 11:00 care. I changed a dirty dipe, took a temp, did his bath, and dressed him in a snazzy long-sleeve "i love mommy" outfit. Pretty sharp if I do say so myself! By then we were past his scheduled lunch, his nose had been suctioned, and he hated bathtime so he wasn't TOO happy! I was more than happy to scoop him up and cuddle him while he ate for the next 90 minutes ;) A couple hours later I needed to give him up because the stench of his dipe was awful! Apparently with Malachi there is a trigger in the back of his throat which when it is suctioned causes him to fill his pants. He still needs to be suctioned every now and then because he can't handle the secretions completely on his own and if they are not removed, he desats below 70% and the alarms start dinging. The worst episode this afternoon while in my arms he got down to 38% and required some work to get him to come back up above the 70 level. Scary stuff when your child starts to fade to a pale, blueish color while laying in your arms. This is why he is still at Riley.

Items to pray for this week:
*Malachi's continued progress with his heart issues.
*The ability for him to swallow on his own and tolerate oral feeding.
*Respiratory issues can be addressed and resolved.