We are beyond thrilled to have our girl home, and we love seeing the “new” little person she is…tiny P is so different now! She is not in constant pain anymore, so she laughs, plays, makes jokes, walks around the house, and most of all…she doesn’t complain of pain. A few months ago, tiny P complained of pain all. day. long. She struggled with everything. Eating made her tired, and so did talking, and she couldn’t walk more than a few steps. She was generally unhappy, and so sick. We were watching her struggle and fail a little more each day. It was excruciating to watch, and I imagine it felt even worse.
I haven’t heard my baby say that she was hurting in weeks. The girl who complained constantly of pain, whose pain was so bad that she woke up with matted hair from tossing her head back and forth and moaning all night. This girl used to pick at her skin and scratch all day long, to take her mind off of her constant pain. That girl is gone, and a happy little girl has taken her place. A little girl with the energy of a three year old, who is getting stronger by the day.
We are so thankful that our girl can be home, happy and healthier, and we are thankful for the MANY meds that are keeping her here. Tiny P takes nineteen meds a day, many of them several times a days, for a grand total of forty doses a day! One of her meds is tacrolimus, an anti-rejection medication, and we have had a hard time getting it to a good, therapeutic level…too low, and it is not doing it’s job, and levels too high can cause toxicity and seizures. So we go twice weekly for blood work. We also get a check up in clinic with her cardiologist once a week, to do an echo and an EKG.
At every catheterization a biopsy will be done to check her heart for rejection, and at her cath last week, her biopsy came back positive for a mild rejection. This is only a grade 1R rejection, and is not alarming unless it goes higher. The positive side of having this level of rejection means that tiny P’s immune system is starting to work again. To keep an eye on this, she has been scheduled for another cath in three weeks.
For now, we are doing our best to keep our girl in a “bubble.” She only leaves home to go to doctor appointments. Little M and baby J go to school, but they change clothes when they come home, wash their hands, take their shoes off, lysol their bags, and wear a mask if they have a cough.
We have been cautioned to be very strict about who comes around her, and she doesn’t go to church or to the store for now.
We are looking forward to the end of flu season, when we hopefully don’t have to worry quite as much, though I imagine that worry will always be much more prevalent than not…
We just had a fabulous weekend at home with our little family, and we are looking forward to many more! Thank you for keeping our little girl in your thoughts and prayers!