Life Outpatient

It has been so nice being out of the hospital!!  Gage has been doing well.  Sunday we were able to all go to church together, which was very nice.  After church, Gage FINALLY cut Jason's hair.  There was a lot more hair there than I thought there would be.  It was quite a symbolic gesture of the journey Gage has been through and the new life that is ahead of him.

Yesterday, Gage went to school for the first time since transplant.  Apparently he was a lot more nervous than he let on.  I had a meeting first thing in the morning with the district nurse, principal and his teacher to review the "new" arrangements for Gage.  He sat out on a soft couch in the office during the meeting.  The meeting lasted about 1/2 an hour.  When we came out, he had fallen asleep on the couch.  When his teacher and I went over to talk with him, he was complaining that his stomach hurt.  I told him we didn't have to go today if he didn't want to.  He was going to make the calls.  But, he wanted to go.  He went in the classroom and was very quiet and stuck next to me like glue.  We sat with his class on the rug and explained some new important rules in regards to Gage and having a suppressed immune system.  His teacher was just awesome, as she could tell he was really nervous.  She let the kids have some free time to "break the ice" a little. Gage started playing with some Legos with his friends, and a short minute later, he ended up throwing up.  He was so embarrassed and mad at himself.  I told him we could leave change clothes and come back, but he didn't want to leave. Luckily a pediatric cardiologist friend was there helping in the classroom, so she stayed with Gage while I ran back to the RMH and got him some clean clothes.  He made it through the whole day of school.  I couldn't believe it. He did lay down during lunch in the classroom, and wanted to take a nap after school (which he didn't), but he really wanted to stay.  He is pretty awesome! He did sleep really well last night.

He is doing great, we just wish his appetite would return.  He eats next to nothing, and when he does eat, his stomach hurts and makes him nauseous.  I guess that is the downside to not being on steroids.  When we force him to eat he throws up.  It just doesn't seem to matter what we offer him, food just makes him nauseous.  The only thing he has going for him now, is his feeding tube that he receives feeds through at night.  It doesn't look like that will be coming out anytime soon.  

A funny story Jason felt I should record, just for our memory.  When they were going to pull Gage's "pigtail" chest tube, he asked if it was going to hurt.  I told him that it would feel like a noodle coming out.  when the doctors pulled the tube, he yelled and said, "that is one stiff noodle, that felt like a metal noodle." So much for trying to down play the pain he was in for.

Presently, Gage is in clinic.  He will have weekly clinic, echo cardiogram (ultrasound of the heart) and biopsies.  Tomorrow is biopsy and he will get his staples out.  He is really excited for that.  So, he is back to school, but will have days where he will miss a lot, and that is fine.  His health is number one priority right now.