Ashtyn is stable and enduring well. Each and every night I sleep at the hospital. Ashtyn and I both like it that way. The nurses give one medication or another at least every few hours both day and night. Ashtyn’s blood pressure and temperature is taken every four hours. Blood is drawn from her Broviac central line every morning at 4 a.m. for lab work. Generally Ashtyn and I sleep through the nursing care. We do wake up every couple of hours for her to go to the restroom. I sleep next to the nurse’s call light so when an IV pump alarm sounds I can quickly push the call light so the nurse can come in and do what needs to be done to quiet the alarm. Other than that, Ashtyn and I sleep quite well. At 8:45 a.m. the bone marrow transplant doctor and nurse practitioner come into the room to assess Ashtyn and give updates on the plan of care for the day. At 9:15 a.m. a loud voice comes out of the room intercom with the same announcement every morning, “The hospitality cart is in the hall. There is coffee, juice, and an assortment of pastries’s. This is for parents and guests only. We will be here for approximately five minutes.” It is then repeated in Spanish. I am normally too tired to go get anything. Ashtyn generally sleeps in until about 11 a.m. to 12 p.m.. With the blinds shut and a quiet room, I have learned the best thing for me to do is continue sleeping even with all the morning interruptions.
Once Ashtyn wakes up I give her a bed bath and wipe down her room with bleach wipes. Sheets are changed and laundry is done. Ashtyn does oral care and puts lotion on herself. After she is clean and comfortable, Ashtyn will normally spend the rest of the day watching movies and messing around on her phone. So far she has mild mucositis which requires a low dose of continuous morphine that infuses into her central line. She also is using the button on the PCA pump to give her added morphine doses. Her mouth and throat pain have stayed under control, however her foot pain seems to be excruciating.
Twice a day IV Cyclosporine is given over two hours. One of the side effects of this medication is hand and foot pain. During the two hour infusion and throughout the day her feet ache terribly. The only things that seems to lessen the ache is to either wrap her feet in cold wash cloths or soak her feet in a basin of luke warm water with added scented Foot Soothing salt. Ashtyn will continue to have achy feet until she is able to take Cyclosporine in pill form.
Day four Ashtyn got her first post transplant transfusion of platelets. Blood and platelet transfusions will be a common occurrence until engraftment.
For the past three days Ashtyn has felt well enough for Jason to come to the hospital to spend several hours with her while I leave to spend time with my other kids. It has been really good for her to have independence from me and to have that one on one time with her dad. It has been really good for me to be able to get outside each day and enjoy the warm sun with my kids.
Chandler has had a perfect recovery from his bone marrow donation. He went to a church BBQ ten hours after his donation surgery. In the last three days he has gone swimming at the local pools three times and went on an overnight camping trip. He is happy and thrilled about what he was able to do for Ashtyn. It has brought new confidence to him that I have wanted him to have for a long time. Chandler has a great sense of humor. If he is asked to do something he doesn’t want to do he’ll say, “I can’t do that, I just saved a life.”
When Ashtyn was getting settled to go to sleep last night she said, “The best part about the day is going to bed. Another day closer.”
We are another day closer to engraftment, another day closer to going home, and another day closer to putting this trial behind her. I am grateful for one more day of minimal side effects and no infections. I am grateful for another day of calm.
She is remarkably and noticeably being blessed.
Day 3: My sister Wendy sat with Ashtyn for two hours. They had a very engaging conversation about scuba diving. Bonaire, here we come! One day.
“The sucker tastes like water. That takes the fun out of eating a sucker.” It was thrown away.
Day 4: Movie night with Ethan and Morgan. We watched “Despicable Me.”