Afternoon update

Just a reminder of this little girl's determination and joyful spirit.

After a busy afternoon of failing IV's (all of them failed), Maisy now has a newly placed central line inserted in her neck. The last of the failed IV's caused her foot to be very swollen and blue. It looks miserable. And, because all of the lines had failed, they had to give her IM injections of sedation because there were no working lines. It took the docs about 45 minutes to get the new line in. She is resting comfortably now but is starting to stir again.

It was nice to have a visitor today--it always makes the time go faster. especially because tomorrow the hospital is initiating their strict H1N1 visitor policies. Hospital wide, there is a total of 4 visitors a day per room and that includes parents (no one under 5 years old.) Each visitor has to be assessed as green, yellow or red based on a screening of exposure and symptoms. Visitors may only visit from 9am-9pm. I think it will be confusing around here while staff figures out how the new policies will be enacted.

Mark is home with the kids now....I think he has the more stressful job!

The good news and the not so good news...

Maisy has been sleeping for almost 2 hours. She only has stirred a few times and is much less agitated. The not so good news is that it seems that she pulled out her central line at some point and it is infiltrating into her neck...it is very swollen and it could explain why she has been so agitated (because the meds were not fully getting into her system.) She is on Tobi nebs (for those of you who know what they are)...because of a respiratory infection. The doctor will be placing a new central line and until then they are using the last remaining IV that is working consistently. Her veins are so difficult to get IV's into because of all of the lines she has had in her life.
She seems to resting comfortable now...thanks for your prayers.

Maisy is still really agitated and uncomfortable with high heart rate and blood pressure. I think they are realizing that taking her off the sedation meds is not a good option. I haven't heard a plan yet except that she will stay in PICU another day. She is running a temp now --about 101. They say that is to be expected with such a major surgery. Please pray for peace that passes all understanding during this for her...

"More Trampoline"

Maisy was heavily sedated overnight. It takes a lot of meds to keep this little girl comfortable. In typical Maisy style she was up and wanted to get going at 6am in the midst of still being in pain and being very agitated. She was trying to sit up and signing drink over and over. She definitely likes her home routine and is not happy that this surgery has gotten in the way of her regular day. Her blood pressure and heart rate are high still but she seems to have calmed down a bit since that last dose of meds.
I was able to get a sleeping room for a few hours after a cancellation. When I came back in early this morning, the nurse said she had a good night's rest but it was hard to ignore the dried stream of tears on her cheeks. "FAS meets Medically Fragile--the Maisy Edition" is what we are living right now.
They are going to attempt to decrease sedation today to try and relieve her agitation. They think that if she can get more awake and moving a little bit, she will do better. I am not sure what they think she will do with a central line, 3 IV's placed, a foley catheter, oximeter, ventilator, and gtube drain and a 4 inch incision! Her hemoglobin is down to 9 and they are considering a transfusion today.
The surgical fellow just came in and said that it will be at least a week until her bowels start working again...although knowing Maisy, she doesn't do things by the book.
But in the midst of it all, she just opened her eyes and looked at me---she signed "more trampoline!"