So I didn't get this post up last night, because unfortunately I got sick myself. I seem to have somehow caught Ben's stomach bug and spent the entire night throwing up. Luckily, as soon as I started feeling sick, Adam left work and got back to the hospital so I could leave. The last thing we want is Sophie to catch it. So I am writing this from home right now, feeling mostly better and hoping I can get back to the hospital soon.
So... yesterday... We started out the day with another chest x-ray. Her surgeon came to talk with us afterward and said that the x-ray looked better and that the last chest tube could finally come out. Sophie was nervous, but she did great. It was over very quickly, and the change in her was immediate. Once she didn't have to worry about it anymore, she started to realize what it meant to have it gone. She could get up and move so much easier and we didn't need to worry about carrying all of the chest tube gear along with us every time she had to get up. Also, since the tubes were gone, she didn't need her morphine button anymore, which meant she didn't need to be hooked up to her IV anymore during the day (they administer the antibiotics at night while she's sleeping). Total freedom!
Just as soon as she was given the ok, she put on one of her own t-shirts for the first time since we've been here, and a pair of hospital pants and was racing off down the hall toward the playroom. It was so fantastic to see her moving again. She painted for a little bit, then played on the floor with a dollhouse and some Barbies. She still needs help getting up off the floor, because the chest tube sites are uncomfortable, but she is doing so great.
We stayed in the playroom until 11am, when we had to get back to her room to have blood drawn. The doctor needed to check her blood for inflammation markers to see how her infection is doing. Sophie hates the blood draws, nearly as much as getting a new IV, but this time they used a special numbing cream on her skin and she said it didn't hurt at all. (Why weren't they using this before??) After that she sat on the couch with me and we did a puzzle while waiting for her lunch. Brianna came by for a visit, and Nana stopped in at lunchtime, too.
After lunch, she wanted to go back to the playroom. It was still closed for lunch when we got there, so we played in the atrium across the hall for a bit. Sophie found a little tricycle and cruised around on that while we waited. Her doctor actually came and found me there, and when the playroom opened Brianna took Sophie there for me and I met with the doctor in her office. She explained that the labs on the blood work weren't what she'd hoped for. The infection levels had dropped, but were still much higher than she'd expected. That meant our hope for switching to oral antibiotics was out the window. Instead, they will install a more permanent IV higher in her arm, called a PICC (Peripherally Inserted Central Catheter) line, which will stay in after we go home. That will allow her to continue the IV therapy for another week or two. The antibiotics are administered just once a day. At first a visiting nurse will come to do it, and eventually teach us how. With the PICC line, she can go about her regular routine - it can be covered for a shower and she can go back to school with it. Also, the best part for Sophie, is that they do put her under mild sedation for the procedure, so she won't have to worry about it going in. It will likely be done today (Tuesday).
After we finished with the playroom, Sophie was wiped out and we went back to her room for a nap. She slept several hours, until dinner time. I had started to feel sick by this point, so I was just waiting for Adam to arrive. After I headed home, Adam and Sophie had a pretty quiet evening from what I've heard.
Now, hopefully, I'll be getting back to join them soon!
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