I have been trying to stay off my computer a LOT more in honor of Lent, but just wanted to thank you all for your prayers regarding Bella, and to let you know what we learned.Bella had her bi-annual clinic at Lucille Packard Children's Hospital (LPCH). When we go down twice a year for this clinic, we are asked to set aside an entire week for any clinics, labs, hospital stays as needed. Bella was due for a biopsy, so we were aware that we very well could end up admitted.Clinic turned out to be better than we could have imagined. The Nephrology Team was very pleasantly surprised with Bella's lab results, how she looked, and all the benchmarks she has hit. It is one of the very few places in life where one is happy to hear "we are so glad we have not seen you here much!". Our social worker told us how rare it is that we have not spent a LOT more time in the hospital.
One very positive outcome of our clinic is that Bella gets to go to every six weeks for blood draws instead of every four. This is HUGE as she has very weak veins and blood draws have to come from her hand (below her knuckle) instead of her arm. They are very painful for her and her hand is very sore afterward.Another positive outcome is that a biopsy has been delayed indefinitely.
There are still some areas of concern. Her blood pressure is low We will be monitoring this more closely than before. It is very stressful on her little five-year-old heart to pump blood to and from an adult kidney.
We are also entering a more common season for rejection. Parents and kids can get more laid back about the intake of fluids, and we need to be very diligent about this in order to avoid those early stages of kidney rejection. Bella cannot go anywhere without a water bottle in tow.
We were reminded by the team that Bella will go into rejection at some point in her life, and to take those early warning signs seriously. We were reminded again of how susceptible she is to certain types of cancer, such as skin cancer, and others I honestly can't remember at the moment.
We learned interesting things. For example, Bella needs to always have a bike with very wide handle bars so that when they are turned sideways, they go around her torso and do not directly lead to to an impact with her kidney (which is now in front - instead of the back - of her stomach). Who knew?!?
So, thank you for your thoughts and prayers. Thank you for the support you have given our family.