6:33 PM We have kept Sophie home from dance class tonight, which is where Elisabeth and Susan are at the moment. Sophie is watching the DVD "Barbie Diaries," so she's quiet. I thought this would be a calm time to post an update. We're slowly adjusting to the new set-up.
As much as Saturday was a blessedly calm day for us as a family, Sunday was a challenge. Amy, our home health care nurse, came to do a blood draw, help with the bath and various other things. We had been told by a nurse in the hospital that it was standard protocol to check the PICC dressing for signs of bleeding. If there is bleeding, it can become a source of infection and probably should be cleaned, sterilized, and a new dressing put in place. Of course, there was some bleeding, so we decided to change the dressing. Needless to say, Sophie screamed bloody murder (not an exaggeration) throughout the whole ordeal, with Susan and me holding her down while Amy worked on the site. It was very upsetting for all of us. The worst part was that because the site is still new, it hasn't completely healed yet, which meant that as soon as it was cleaned (no small feat), it started bleeding again. There really was not much we could do other than put a new dressing down over the small amount of blood that came out. Later, Susan talked to a nurse at UNC-Children's Hospital and got the impression that as long as the site does not continue to bleed under the dressing (such that the air-tight seal around the site is broken), it would be better to leave it alone and let it heal, otherwise we'd be changing the dressing every day, a process that would undoubtedly bring even more and more blood and more and more chance of infection and less and less opportunity for healing. Augh! Way too much information, but it was very traumatic.
Also traumatic was the process of removing the small dressing that remained on the site of Sophie's chest catheter. She was not at all interested in bathing without a bib, so we indulged that request. After the bath, we took the dressing off (more screaming bloody murder). The site looked bigger than I expected it, but there was no noticeable bleeding there. At the moment, it has a Scooby Doo band-aid over it, which is a major step forward in my book. Granted, there will be no touching the Scooby Doo band-aid if Sophie has her way, but we need to check it out every now and then. Sophie still has the EKG (?) leads stuck to her chest and the band-aid from the peripheral (hand) IV that was used during surgery on Friday. The poor child is just so overly sensitive to anything touching her skin, particularly the number of places where she's been stuck over the past few days.
Sophie did not go to Countryside today, although we offered to take her just for a visit. She's very protective of her arm and I cannot imagine how she would function in a group environment, let alone trying to play.
We get glimpses of Sophie as her normal self--she just walked in carrying a toy of Elisabeth's that plays snippets of music from "Barbie Diaries," and said, "Hey Dad! Want to hear some totally hot music?" Unfortunately, she did not get a nap today, and we are paying the price this evening. Everything is a major tragedy and she is as impatient as, well, as impatient as her parents are most of the time lately!
Elisabeth came home from school today very excited because she got a trophy for taking piano lessons last school year. When I asked her if that meant she was interested in taking lessons again this year, she nodded her head. Then, since we're reinstituting our no-TV during the week rule (halfheartedly, especially with Sophie home all the time), Elisabeth went straight to the computer to play some learning games. I'm glad she likes school as much as she does!