Tuesday, July 29, 2014

Update on Ryan

As you might know, I was a little nervous about having this surgery done at this hospital because I had never been here before except for a clinic visit with the Geneticist and a modified barium swallow.  It felt like an old hospital and it's farther from home.  More than anything I just didn't have experience with it.  Change makes me nervous, especially when it comes to Ryan.

I can only think of one doctor that Ryan has seen that we did not like and he's no longer on our team. He might be a great doctor, but his style didn't work for us. We have had good experiences at both of the other hospitals we have stayed at.  We have had great experiences at the two other PICUs we have been in.  One even served me warm chocolate chip cookies before bed.  Who does that?  A great team at North Central Baptist Hospital that wasn't very busy one night.  It's comforting to recognize and be recognized by so many of the doctors when you arrive on the unit.  Obviously it's not preferred to be at the hospital, but if you're going to be there, it's nice to already know at least some of the team.

The team here, including the PICU doctor, Dr. Tong, and nurse Gina were simply amazing!  Dr. Tong spent more than 30 minutes with me when we first arrived in the PICU yesterday.  Dr. Tong took plenty of time double checking all of Ryan's meds and he was really appreciative that I brought a small bag of Ryan's meds with me to the hospital.  (It's actually a one day supply of meds that I take with me everywhere.  They are in prescription bottles and so the labels tell the doctors everything they need to know for ordering the correct meds for Ryan.)  I usually bring with me a list of his medical team, but in an effort to only bring one bag, I left that list yesterday. Oh, how I missed it!  Trying to remember everyone on his team is quite the challenge.  I won't forget it again.

The anesthesiologist also spent several minutes reviewing how things went in the OR.  Ryan needed assistance breathing following surgery yesterday but was able to move to room air fairly quickly. Talking was a lot of effort and seemed to be difficult for him yesterday.  This was probably due to the breathing tube they used during the surgery.  He was vocal very little compared to his usual level.

Ryan and I were able to get some rest last night.  However, he ran a fever of 101 something and his blood count percentages went from 36% to 27%.  His oxygen saturation levels also dropped into the 80's which isn't really that unusual for him.  The fever is not really an unexpected thing for someone who has had such a major surgery and they have started an antibiotic.   They have restarted iron for him due to the blood count changing.  They will be keeping an eye on these issues today.

They are also going to start introducing some foods.  They are going to start with 1/2 of his usual volume of food, but they are going to try Pedialyte first.  If he tolerates it well, then they will move to Neocate Jr, also just 1/2 of the usual volume.  By end of day, hopefully, we will be up to normal volume of food.

He is more alert today and seems comfortable until we rotate. Any movement of his lower body seems to make him nervous and a little uncomfortable.  We rotate him every 2 hours round the clock.  He is really enjoying listening to music from Pandora this morning and likes it when people wish him a Happy Birthday today.  When the Doctor asked if he could sing happy birthday to him, he said, "Yes!" (with his eyebrows) and smiled.  It's the only smile I've seen from him since Sunday.

So, happy 6th birthday to Ryan!  I cannot even imagine, nor would I want to imagine my life without him.  He has brought so many blessings and gifts to our family.  It is truly a joy to be his mom!

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