Still here

Just a quick update so I can get to bed - the surgeons come around in the 6:00 hour and the nurses do vitals every 4 hrs, so it's hard to pack in enough zzz's.  This morning the surgical team decided to go up on his feeds, but for whatever reason (busy OR?) they didn't put the actual orders in until 5pm.  Unfortunately, Lalo is back to frequent vomiting even before the feeds went up.  Now that feeds are going through the jejunal (small intestine) tube, he is only throwing up meds and stomach bile, but he still has reflux pain and still occasionally seems like he is choking, which I'm sure means he is still a pretty high aspiration risk. :(

 

We were able to get Kennedy Krieger (the neurodevelopmental hospital) to come do his assessment while we are here.  We had an appointment scheduled for them on Wednesday, that took at least 3 months to get on their schedule so I was glad we don't have to miss it and they will come to us.  We already talked to their resident and will see the attending doc in the morning.  We also got neurology to come take a look at him too, and it sounds like they will see him again tomorrow.  He is doing well with pain management and they have backed off a bit on his meds.  We are at 15/hr on his feeds and they will increase by 5 every 5 hrs.  I heard from the nurse that the doctors ordered an MRI for tomorrow, but I haven't found out exactly why yet.  I'm sure the MRI will be sedated - fun, fun!  An abdominal xray didn't show any issues today.  We will see what other tests they can find for us tomorrow to try to figure out the vomiting.  The surgeon seems optimistic that he will send us home tomorrow, but no one else seems to agree.

 

Sorry for the brief run through. Just wanted to get out my notes on the day!