Yesterday was a pretty good day. I asked the nurse to send Child Life in here and they gave Carla a little Lego Friends set to play with.  It was so nice for her to have a distraction.  I also went to the gift shop and bought her two little stuffed toys and a little pencil sharpener and a chocolate bar. So, she played with her toys and that was good. It's so hard to be cooped up this way. And, because she has a cough, they wont let her go for a walk or leave the room.  I can't even use the refrigerator on the floor. I asked them if they could lift the restriction, because she has had two viral panels that came back negative, but they wont. It's super annoying and I have moments that I just really hate this hospital. I guess I was spoiled at Primary Children's Hospital because they are SO GOOD to their parents. Seattle Children's really could learn a thing or two. Maybe it's not fair to compare, but I can't help it.

Monday night Carla had a scary little incident that looked similar to when she got the PRES syndrome after she had her transplant. She was seeing things that weren't there and in a dream like state for about an hour and a half. I was so scared. I told the nurse that I was worried about PRES, that I wasn't interested in giving her any immunosuppressants until we knew her levels and that I wanted the doctors. Turns out she is fine now (thank you Jesus) but one of her med levels had jumped from 5 last Monday, to 10 this Monday, to 14 yesterday... and that's without giving her her Monday night dose. I can't even imagine what damage could have been done had they given her the Monday night and Tuesday morning meds. The antibiotics have changed the way her body has been able to metabolize the medicine, so the level jumped really high. We will be holding that med for a while and only giving her half a dose of the tacro (which actually is metabolizing fine, but was the one that caused the PRES back in 2012). 

Overall , Carla is improving, we have been able to turn her oxygen down over the last two days, from three liters, to two, and last night down to one liter! Her oxygen saturations are still in the 98-99 range, which is fabulous. She is still having at least one fever a day. They don't come on quite as fast but they are still rearing their ugly heads. Let's see if I can upload a couple of pictures...

Taken Saturday, at Benefis in Great Falls. 

Getting ready for the Mercy Flight.

Monday, after I gave her a shower and braided her hair.

Yesterday, Carla was so sick of being in her bed, but couldn't go anywhere.  I took her out of bed, put some music on, held her and danced... then I sat on my little bed area holding her and dancing (she's not as small as she used to be). We took this selfie and then she fell asleep on my shoulder shortly after. I let her sleep on my bed (without monitors) until the nurse came and made her move. She just needed to feel a tiny bit of normal... 
Here's to another day of healing and prayers for healthy lungs. 

Love, Jen


Shellie Creveling said...

Thinking about you guys!

The mom of 4 monkeys! said...

Glad to hear she is on the upswing! I can't believe how grown up she looks in the selfie!