Yesterday was Day 3 of her Hi CY. She had an insane night of fighting nurses and Kris. She was biting and fighting so much. Then she finally calmed down and slept a bit. At one point Kris said she let out this blood curdling scream that had the nurses running in to check on her from the station up front. But she was just sleeping as she normally does at home. It's weird to realize what we've become customed to at home when you see the reactions of other people who aren't around a sleep talker/walker. Then add all the medication and she doubles up on it.
Yesterday was a lot of schooling for me.
First with the breathing issues I was concerned about the night before. Dr. Badgett came in to see us - he is one of Haven's constant Oncologists. We haven't seen him in probably 4 months since Haven's schedule was flipped around and Dr. Paz-Priel took over the main schedule and medications. It was nice to see him again and make a few jokes.
Then Dr. Paz-Priel came in - which I was really surprised to see. It must've been his day off because I've never seen him dress casually - which was nice to see and a bit more relaxed. We discussed the heavy snoring and he saw her videos that I sent to him. Since her O2 levels were at 100 and she has been super medicated, over hydrated, and not moving too much he was not getting concerned about it. Which I understand. But it's my job to point out any little itty bitty difference or change in her. Of course, he knows I over analyze and journal every bit of it for my records.
Then our other Oncologists Dr. Fernanda and sorry I can't remember the other one but he's very quiet. Came in to check her out. They check on her every day - multiple times. I explained my concerns of seizures and such when she snores like that. And they made a very good point - if she is going to have a seizure or anything else she is in the best place to have it. She is completely hooked up and monitored day and night.
Haven did extremely well considering everything she has been put through. I have tried to explain as much as I can to her about all of this. She has been asking questions and seems a bit sad at the answers:
When is Lauren coming to see me? - I don't know when she can right now
When can I go home? - not for a long time
If I don't have any more chemo why can't we go home? - because the chemo is going to make you very sick and you have to be with the doctors and nurses
Can any friends come to play with me? - these are the child life people. She hasn't been able to play with any of them yet
When we go home can we go to a store and get a small blanket for all my babies? - yes but we can't go to a store right now
It's hard. I believe she is tired of being locked in her room. I know she doesn't like all the cables. Her new port is hurting her a lot and she complains of itching all the time. I'm terrified she's going to pull on it. So I keep it safety pinned to her gown. She wants to know when she can wear her pretty dresses.
I know...in the big scheme of it all I shouldn't get upset at her not being able to wear her dresses but this is what I knew she'd miss. It hasn't even been a week yet!