Technical terms

More on "fellows"...I was walking in the hall late last night and walked past one of the isolation rooms. The door was closed and I could here a child (probably toddler age) screaming and crying. One of the fellows was standing outside the door talking on his little wireless phone system. I'm presuming he was calling the attending. What I heard was, "I don't know what's wrong. She's flippin' out".



As I was riding up to the peds floor in the elevator here last night I was just chatting with some guy about the elevators (quirky). I recognized him. He said, "You are a fellow here, right?". It is funny how the occupation of doctor holds such a place in our esteem and psyche...or at least mine. I felt like that was a bit of a compliment. Even though he clearly just recognized me because I've been living here for the last 40 days, I felt complimented because he mistook me for a doctor.

Tonight there was something minor going on with Nathan (A slightly elevated heart rate that is no big deal). The nurse told me she would inform the doctor that was on tonight. I asked who was on. She said, "Oh? I don't remember her name. I've seen her around a bunch though. She is a fellow." I don't think the nurses are so impressed with young doctors.


The crash

Its a given that prolonged periods of time in the hospital are physically hard. The lack of exercise causes lots of things like muscle weakness, bone softening, etc. As I think about Nathan's current state, I'm really just surprised at how fast he went from weak but not so drastic to really, really weak. When Mom was here last week, at the beginning of the week, he was helping decorate the Christmas tree. He was getting down on the floor to put ornaments on. Getting up and down, moving around the room up and down off a stool, walking normally, and just in general still physically doing well. Before Mom left he started eating less and his activity levels crashed. He started limping and soon he was just not wanting to be active at all. He started PT and OT this Monday. Since then he is *so* much more active, his limping is much less frequent and sometimes not there at all, and he is eating more and wanting to play and do more. So he has made great strides in the right direction...and he still can't get up off the floor without something to grab with both hands and pull himself up with. Its just shocking to me how far his physical abilities crashed so quickly. I guess he had weakened but was still doing some fraction of the normal stuff. Then he lost motivation to be up and around and over the course of a few days he just bottomed out.

The single thing that has turned his disposition around the most and been the best for him physically and emotionally has been starting on physical and occupational therapy this week. He still doesn't want to exercise with me, but he loves to "play" with the therapists. They won't be in over the weekend so I'll try and just maintain things by getting walks in and spending some time in the playroom.


It's time to go home, Daddy

Tonight after we did our nightly medicine and bedtime routine, Nathan buried his head into his pillow and began to cry. I climbed into bed with him and pulled him close and held him. After awhile he calmed down a little bit and I told him I loved him. He told me he loved me too. Then I asked him if there was anything I could do for him and he just said through his tears, "It's time to go home, Daddy".

He settled down and said he wanted to go to sleep. I went and sat and the bathroom and cried.


What Child is This?

This morning Nathan and I spent a long time putting together a very cool LEGO rescue helicopter. We listened to Christmas music and he sang or hummed along to every tune in his sweet little voice. He kept telling me which ones were his favorites. He really likes the traditional Christmas hymns, and I couldn't be happier about that. Those are my favorites too. He was so content and happy and I had to keep choking back tears as I listened to him hum those Christmas songs. It made me so happy to hear him, but I couldn't help but wonder if I would get to hear him sing Christmas songs next year. I have to fight off those types of thoughts and get all the joy I can out of these moments. Sometimes it is harder than others.


Day 29. We had a day nurse that we had not had before. Hate that. I feel like I have to break them in and explain every little thing about Nathan's care. Guess what? We also have a night nurse that we have never had. I see at least three other nurses on tonight that have had Nathan on multiple nights. I don't get it.



Today was a rough day. Nothing rough from the medical angle. No transfusions. No high blood pressure. We slept in. Nathan was a little more bored than usual with the hospital routine. We did crafts. We did a big science project thing we bought in the gift shop. We put together and played a new game that we got in the mail from some friends. We did another craft thing that came in a different package. And we fought a lot. Nathan wanted to blame me for every little thing that annoyed him. Where did I put his Kleenex box? Why did I get crumbs in his bed? Why did I switch where his milk glass and water glass were sitting so he grabbed the wrong one? Why do I have to go check on the laundry again when I just did it?

My Mom is going to make it in tonight. It will be very late. I think Nathan and I are really, really happy she is getting here. We need the break and we need the break in the routine too.