Crappy, Crappy Day

Maybe I should try to be more positive. Maybe I should wait a little while before I try to write about today. But it's 9:30pm and I want to get to bed sometime tonight.

So, the morning looked promising. I packed some stuff so I could spend the night, thinking that she would be moved to the floor today.

Well, that didn't go so well. Her sats were in the 60s all day on trach collar. They tried to wean her oxygen down (she can't go to the floor on oxygen that high). But, after getting to 50%, she was clearly blue. So, the nurse had to go back up to 65%. Although, to be honest, she's still a little blue.

And she's been crappy, and mean, and nothing makes her happy! I think her attitude really took a downward turn after the physical therapist came by to work on her. She asked me if Harlie wore ankle braces, and I said yes. She asked to see them. So, I gave them to her. I wasn't paying attention to what she was doing, but the next thing I knew she had Harlie's socks on and was putting on her braces and shoes. I thought, whatever.

Boy am I stupid!!!! No wonder why Harlie was so cooperative - she thought she was going HOME!!!! She signed "let's go" and took off her trach collar - and there was no getting it back on. She cried and cried and it broke my heart! I had to kick the therapist out of our room.

In general, she's mad. Really mad. She reaches out for me and then when she realizes that I'm not going to pick her up and take her out of there she gets mad and swats at me. And if I am even touching her bed in any way, she swats at me some more. I know that I shouldn't take it personally. She has to let her anger out, and that's what I'm here for. But, it is getting harder and harder to deal with it. Especially when she takes whatever is around her trach (collar or CPAP) off and will NOT let us put it back on. She has a mind of her own and fighting that is not easy!

She did have an hour where she seemed comfortable and was her funny self again. She wanted to get a bath. I know this because she signed "bath" and then dumped out the stuff from the basin. Then she pointed to the soap. So I gave it to her. She pumped the soap into the basin then rubbed her hands all in it. Then she rubbed her soapy hands onto her legs and feet. It was quite funny because I really think she was truly trying to bathe. You should have seen her scrub her feet - she was very thorough. She even tried to climb in the basin, but it was too small. Then she grabbed some kelly clamps (they look very similar to scissors) and she tried to use them to cut off her hospital bracelet around her ankle. She SO wants out of here!




A friend of ours (Mike) had to go to Maryland for his job today, and stopped by here for a visit on his way back to Richmond. I was so glad that he came by. For several reasons.

1) it's always nice to have a visitor. For me and for Harlie. I forget that she's not a baby anymore and she is fully aware of who is around her. It has to be somewhat comforting for her to see familiar faces. And she's surely tired of mine!

2) we went out of the hospital for lunch and it was SO nice to get out of here for a meal!!! It was the first meal I've had out of this place since Thursday.

3) he took me by the RMH so I could take some things back to my room without having to walk the two miles carrying them. Since I thought we were getting moved to the floor, I packed my stuff to stay at the hospital, and took the shuttle in since it was heavy. But, since I'm not staying here now, I need the stuff back at my room. But, the shuttle leaves to go to the RMH at 5:30pm, which is WAY too early for me to leave her. Anyway, it just worked out perfectly. And I really, really appreciated the break and the help. So, thank you Mike!!!

Well, when I got back to her room after lunch she was BACK on CPAP! UGH!!! VERY disappointing!!! What is going on?!??!?!?

They said that she will stay in the CICU for another night.

I'm just so disappointed. I don't understand what's going on. In the morning I'm going to ask them what their plan is to FIND OUT what's going on. We're right back where we always go - is it a pulmonary issue or cardiac issue? AAAAAGH!!!!

Personally, I think she needs to get up and out of that bed. Maybe moving and walking around will help her lungs (not to mention her spirits!). The problem is that she has an arterial line in her wrist and a line in her chest that goes right into her heart. And she cannot be moved around with those lines (especially the heart one). I asked if we could let her sit in my lap and they said no. So, I think they need to remove those lines and let her get up and about. I will suggest that at rounds in the morning and hopefully they'll go for it. I know it won't be an easy argument. They like to keep those lines for an emergency. But, I just think we need to break this cycle - we're not getting anywhere!

Oh, she keeps spiking fevers. So they keep taking blood and respiratory cultures, but so far there's no growth. But they have her on antibiotics, just in case. The nurse had a good theory today. She said that they had changed her order for Oxycodone to be given as needed (they were giving it on a schedule). Well, she didn't get her normal dose, and that's when she started acting so agitated (and mean). So, she gave her a dose, plus Tylenol for her fever to see if that made her more comfortable. When that didn't calm her down, they gave her Ativan (for anxiety) and that seemed to help.

So, today was a MAJOR setback. We've never had this much trouble getting her off breathing support. I really hope we figure this out soon.

I'll update as soon as I can in the morning.

Thank you!
~Christy