Friday, February 6, 2015

New Year - New Germs

I never got around to updating the blog after Elizabeth was discharged back in October. We were SO ready to be home and get back to normal.  We were able to spend Christmas and her Birthday at home. Her birthday this year was very special to me. Elizabeth and I were able to spend the day together. I took her to get new big girl glasses, and we went to a trampoline park. She LOVED me jumping and bouncing her. IShe seemed just like any other kid running around wanting to climb and bounce. I was so proud of and for her!  Elizabeth tends to do her own thing and not really want to interact in public places, so this was a huge deal for her and me. Then she was able to go to the book store and pick out some books. I think she really enjoyed her Birthday this year.
Unfortunately, since we returned home Elizabeth continued to not feel so great and in December we were back in Cincinnati for her 3 1/2 year checkup. Thankfully everything looked ok with her lungs, biopsies showed no signs of rejection. Her aortic root dilation is about the same and ENT was not concerned with her airway. There were a few changes made to her medications to make life a bit easier as far as her medicine schedule goes. After Elizabeth returned home in October she was having major digestive issues, vomiting numerous times a day randomly. She was losing weight, and not able to ever have a full feeding we were finally able to get her in with GI here at home and she was given anti fungal medication and medicine to help with motility. Thankfully today she was FINALLY able to tolerate a full feeding. Yes, you read that right MONTHS of throwing up and not tolerating her feedings. Talk about miserable. Lets add to that that she has recently had RSV, and ear infection, and her lungs were starting to look really hazing (signs of early pneumonia).  And lets add that her IGG levels have been low, and she has needed IVIG infusions since October. We decided to try a different version of IVIG that can be given at home subcutaneously. She ended up having a reaction to it and was sick for 24 hours from it. This honestly has been the worst winter for her since transplant with illness. We are just hoping that all this illness will not cause any damage to her lungs. She has missed alot of preschool this winter. We are in the process of scheduling her transition meeting for Kindergarten and Matt and I are really concerned about allowing her to go to public school. We want her to have a normal life, and be able to be around other kids and experience things, but we have to also consider how susceptible she is to getting sick. So we will discuss our options and then decide what we think will be best for her. So months of having a sick kids results in months of mommy or daddy - in this case mostly daddy having to be home or work from home to take of Elizabeth.  Due to being out of personal time, I was not able to call in as much as I wanted too but thankfully Matt was able to stay home to care for her. I am so thankful for him!
We will head back to Cincinnati this week for a followup with the transplant team. Since the pneumonia in October and all the other illnesses this winter could set her up for decline. The team wants to see her more often. We are praying for only good news and a short visit!