27 March 2017

Recovery Day 4

Look at that cherubic face!
The rest of yesterday went pretty well.  We moved out of the PICU in early afternoon and have been on the regular floor since then.  He's been up and walking more and healing pretty well.  Pain has been managed well too he just wants the RED off his head already.  All in all he's recovering very well and we'll probably be discharged today.

We still have some challenges though.  Feeding is still an issue.  He still has the ng tube in and oral feeding is not going the greatest.  He can do juice and water somewhat but needs to be reclined not to drool.  The feeding tube freaks Rachel out a bit, but we need to keep it in until he can take enough by mouth regularly and not throw up.

The other issue we have is that his stools are so loose every time he passes gas he has an accident.  We've gotten better this morning about going to the bathroom, but we've had 4 such accidents the last day and it doesn't bode well for the 12 hr drive back to Atlanta since I can't pull over every time he needs to pass gas.  We've bought big kid overnight pull-ups for kids that have bedwetting issues so I joke we now have three kids in diapers, but hopefully this gets under control soon and gets better once we get him on soft solids.

Trying to drink some water though a dye bottle
The biggest issue we have is that he now thinks he did something wrong and that the RED is punishment for him.  He's seen himself in the bathroom mirror a couple of times with little reaction.  He kind of stopped and stared for a second and then kept washing his hands, but I think the bar in his face and fact he can't lay on his belly like he normally does is more of the issue.  We've tried to reinforce he hasn't done anything wrong and that this is all to help his breathing, his ears, and make him even more handsome.  We think its just him hyperfocusing on it and the autism tendencies taking over but its so hard.  We've asked other Apert and similar cranio families for some pics of their kids in the RED having fun to show him that lots of other kids have had this and they're not in trouble.

We'll be staying at least a day in the hotel once were discharged and then probably hit the road back to Atlanta early and try to do it all in one day just to get home.  Everyone's prayers are still greatly appreciated.

Had to go visit the Chipmunks on one of our walks


Stacy Horst said...

So Cute, still praying and hope you can come home soon. It always feels better to be in your own home.

Gretchen McNew said...

The Chipmunks!!!!!! I'm so happy to hear he is healing well. It will be a relief to get home. I can't wait to see my little big man! Thank you so much for the updates. I've been sharing with his cheerleading squad back home.- Gretchen