Not feelin' the love about Mott's anymore. Haha (I still love the staff but the facility, not so much.) We got moved to the regular floor after all. I am really struggling with it, which I'm not proud of. The room is small and depressing. It's smaller than her PICU room and we share it with another family. Their little boy's bed is literally two feet from Kate's. Can you say, "Claustrophobia?"
They are sweet...but he is loud. And he just woke Kate up after I had gotten her settled down for the night. *sigh*
I will adjust, but tonight I am trying really hard not to just bawl my eyes out. Kate is sad and looks confused. She gets sooo upset when she is moved because it hurts her. Then she looks at me with the question in her eyes that says, "Why are you letting them do this to me?" I feel awful for her.
The little boy next to us had a normal fontan, was out of PICU in three days and is already up walking. Kate was in PICU for eight days and is sooo weak. She did sit in the chair today but cried and cried and then fell asleep sitting there with me holding her head up. Tonight her alarms keep doing off because she has had one Desat after another (which means her oxygen levels drop too far when she is sleeping). She is still on oxygen. She has not eaten anything yet, although was able to take some sips of apple juice. Please pray that she will regain her strength quickly and that her chest tubes will dry up. When the fluid stops and she can get them out, she can come home. I pray it is not weeks before that happens, but I think it will take a miracle for her to be able to go home soon.
I stood on their side of the room to take the picture of our side. (The curtain is where their side starts.)
There is a playroom, so that was encouraging. Until... I was in there with the big girls, who had come to visit and noticed a little boy with snot running into his mouth. He then wiped it with his hand and went around touching almost every toy in the room. ugh. I asked the nurse if there was a no-sick-kid policy for the playroom. She said yes, so I told her about the sick child. She went and told someone, but then no one came to clean the toys. They were soooo careful in PICU. If anyone got sick, they totally isolated the child away from everyone else. Now I feel like I have to try to keep Kate safe from others who are not worried about infecting other kids who have had a major surgery.
I'm bummed...can you tell? I considered not writing this post and just pretending that I was fine...but that is not truthful. So...I'm keepin' it real.
Kinda feel like I'm in a camper