October 2, 2011 - Day 1

3 months, 3 weeks, 6 days since diagnosis
day #12 of current hospital stay

Last night, Riker coughed all night. The kind of cough that keeps a mom up listening. The kind of cough that scares the daylights out of you when you have a nutropenic infant who just under went a bone marrow transplant. I spoke to the pediatrician last night and she didn't think it was anything to worry about because she doesn't have a fever. Maybe irritation from the NG tube? Maybe mucositis starting to bother her throat? Infection is not likely since her and I have been here for longer than 7 days and Jon and Valentine were apparently healthy when they came. Either way, I'm very nervous.

This morning, she had a bit of a rough time. She wouldn't settle when she woke up so we ended up giving her morphine. Then, in her sleep, she threw up the vanco-poly the nurse had sneaked in her NG tube. Certainly, this is the most volatile of the many IV and oral meds she has to take right now to protect her and manage her transplant. It is scarey to see a baby throwing up while they sleep, gagging on their own vomit. Other than that, she slept most of the morning.

As the day went on, Riker's day got better. She was even unhooked for a little while in the afternoon and we played until she got tired again. When she got fussy, I put her into her crib and she settled down. She was quiet, so a while later when I checked on her, I thought she was asleep. Unfortunately, she had pulled out her NG tube and quietly sucking away at it. Putting a new tube in is awful. She hates it. It irritates her throat. She needs an x-ray after. This means about an hour of nothing but her screaming :(

The doctors and nurses decided it would be ok to leave the tube out for the night, at least. Riker hasn't taken anything orally in days and we also wanted to see if she'd take a bottle again. No luck there. She's not interested at all. When she seems like she might be, she ends up crying out. It seems like she's in too much pain to drink. We'll just have to wait and see what morning brings.

On a lighter note, I finally decided to take care of myself. I have been getting down right depressed shut up in this room all day and it's not doing any of us any good. Today I took the first step and went to the gym. I was only out of the room for an hour but it was a good hour and I feel pretty good. I hope to make a habit of this :)