3 months, 4 weeks since diagnosis
day #13 of current hospital stay
The doctors decided not to put the NG tube back in. It is irritating Riker's throat for it to go in an out so often. Her mucositis is getting worse and the tube is not helping. The good news is that, with the tube out last night, Riker's cough was nearly nonexistent. Obviously the tube is an irritant. So, starting tomorrow, Riker will be put back on IV nutrition or TPN. I would really like her to take at least some breast milk but she simply is not interested in her bottle.
Today, Riker's pain is much worse. We have been giving her more regular morphine but it isn't helping for long. We've begun to see evidence of sores in her mouth and she is making the saddest opened mouth expression when she's in pain. Tomorrow we're going to talk about putting her on a constant morphine drip to keep her more comfortable. I keep telling myself, this is only temporary. We just need to get through one more hour, one more day. Moments drip by like lifetimes when she's in pain, though.
Riker spends most of her day in her crib. She's got a gel pillow to help with possible bed sores. I feel bad, like I should hold her more. But, she doesn't want me to hold her. She either wants to sleep or play quietly by herself. I just don't think she has the energy for a lot of interaction. The moments that she isn't too tired to play are shorter and come less often. I keep worrying that she'll never want to play and be held again. I know that's not rational... when she feels better she'll be normal again. I am still afraid.
Today I started the couch to 2 5k program. I went for my first jog in probably 15 years and it was nice. Boston is a beautiful city, especially this area. It was a wonderful day and I think it helped to get some sun. I ran 1.5 miles in 20 minutes. Not bad for a internet junkie analyst. Again, only out of the hospital room for 1/2 an hour this time but it was a good 1/2 hour. I'm making the best of my time away. I'm gathering energy for the next big fight.
Good for Tory! You need to take care of yourself also! Riker is in good hands. Remember that you have many people here keeping good thoughts in their minds at all times when it comes to your family.
ReplyDeleteRenelle :)