Tuesday, December 6, 2011
I want to begin by thanking our sweet Jesus for answered prayers so far. My prayer was that she would stay out of the hospital for December. I know it is early but I am grateful that we are managing everything from home. I am so lucky that I have three great nurses that help me out. I wouldn't be able to do it without them.
Overall, Annabel is doing ok. Most days she is able to attend school and her therapy. Due to her liver not doing so great she is down to only 12 hrs. but it may not last. She seems to need more fluids. The 12 hours is new and we will see how this hold out. Her fevers are still considered her normal low grades that range anywhere from mid 99's to mid 100's with the occasional 101. But we aren't medicating this temperature and we do blood cultures most weeks to make sure the temperatures are harmless. Annabel's liver enzymes range anywhere from the mid 100's to the 900's. Up one week and down the next. She itches almost all the time. Many days she rips her dressings off with the itching and we have double the dose of Benadryl. We are assuming the TPN is what is causing her liver issues which in turn cause her itching. She has to be watched constantly for the itching. I am thankful for the 3 nights of nursing so I can truly sleep and not worry. Annabel has been free of IV antibiotics for over 2 weeks and this is a record in a very long time. (Shhhhh!)
Our Thanksgiving was great with the family over at our home. We love how busy the house is and we get to spend time with my brothers family who is from Dallas and my sisters son Corey and Molly from Austin. Hoping that each and everyone of you had a wonderful Thanksgiving.
You can see from the pictures that Annabel is happy most days. Somedays she is just tired from maybe not sleeping so well. She desats so much now at naps and nighttime. So her sleep can be quite interrupted. She does sleep with oxygen and this helps.
Thank you so much for continued prayers that Annabel stays infection free from central line, UTI or really anything. My biggest Christmas wish is for Annabel to be in our home for the holidays with all the rest of the family. Have a wonderful Christmas season and let us not forget the real reason....