Things are still going great. Today was a relaxing day in the hospital. In between watching movies, playing on her phone, and sleeping, staff worked to keep Ashtyn comfortable and manage any side effects she experienced.
After Chandler donated his marrow, it was tested for any infections before it was given to Ashtyn. Whether it had an infection or not, it would still be given to Ashtyn but they would know what to treat her for. Today the blood culture from his marrow came back positive for a staph epidermidis infection. This type of staph is a bacteria that is found on everyone’s skin and not a type of life threatening infection that many people think of when they hear the word “staph”. The concern that it would affect Ashtyn was minimal and the likelihood of it being a contaminant from Chandler’s skin during the harvest procedure is high. However, with a bone marrow transplant, doctors are ultra cautious. The doctor quickly wrote orders for the nurse to obtain a blood culture from Ashtyn and start the antibiotic Vancomycin. While Vancomycin was being infused over an hour, Ashtyn had a side effect to the antibiotic called “red man syndrome.” Her scalp turned red and her face was flushed. The rate of the infusion was slowed down and Benadryl was given to lessen the symptoms.
Methotrexate is another drug that Ashtyn is taking. She is given a dose of Methotrexate on post transplant day 1,3, 6, and 11 to help minimize graft versus host disease (when Chandler’s immune cells attack Ashtyn’s body). Mucositis is the side effect from total body radiation previously received and the doses of Methotrexate. By Day 10, whatever the severity of mucositis she has should not get worse. However the mucositis will not be able to get better until engraftment and healing blood cells are produced.
One thing that is very important to the staff is to keep the pain that Ashtyn will experience to a minimum. She is beginning to feel pain in her throat as mucositis is becoming apparent. The severe pain in her feet continues to be a side effect from the drug Cyclosporine, which is also used to minimize graft versus host disease. The goal is to keep pain under control rather than try to “play catch up.” It is much easier to manage pain if it is not allowed to get out of hand. A morphine patient-controlled analgesia (PCA) pump will soon be started. The idea of the PCA pump is to give Ashtyn control of when she gets morphine. She can push a button any time she is feeling pain increase. The pump will allow her a maximum of one push every 10 minutes with an hourly maximum dose. The doctors can always increase or decrease the maximum morphine dose depending on how well her pain is being controlled. Her oxygen saturations will constantly be monitored while on morphine because of the risk of shallow breathing and decrease of oxygen in her blood.
I wrote a post on April 26th called “Opposition Is Not A Bad Thing.” The medications given to Ashtyn are saving her life. However, so many of the medications and treatments have side effects. It has also been fascinating to observe that for everything “bad” that happens, something good always comes about. I noticed that early on when Ashtyn was most sick. On February 14th I wrote the post, “There Is No Such Thing As A Bad Day.” I stand by what I wrote in those previous posts:
I’ll take the “bad” opposition to enjoy the “good” opposition any day.
“There is no such thing as a bad day; just bad moments that we choose to take with us all day long.”
Today Ashtyn was able to have a smooth day without any surprises. She had her home health nurse visit without any obligation to do so other than to raise her spirits. During the evening she had one on one time with her dad. What 12 year old gets five hours of one on one time with their dad with very little distractions?
I was also able to enjoy one on one time with Ashtyn. What mom gets hour upon hour, day after day, one on one time with their 12 year old daughter? I was also able to spend time with a dear friend at the pool and spend time with my three other children worry free.
Life is Good.
Ashtyn’s home health nurse making her smile