Hello from Tucson!! I had a GREAT weekend with my sisters and was able to relax....a little. I really needed to get away, but at the same time, it was so hard to be gone. I am thankful for the time I was able to spend with my best friends (my sisters), and we had a nice time at the hotel relaxing in the lazy river and being silly together.
We are now at day +3!! 3 days down....97ish to go....we are getting closer!! Day +1 went well. Dylan just slept most of the day and cuddled with Grandma. Day +2 is when the fevers started. He had fevers on and off most of the day and once it went over 102 degrees, they took blood cultures from each of his lines (they take the cultures to check for infections). So far, the cultures have been negative for bacteria, but we will find out tomorrow about the final verdict. The nurses were excited when he got a fever, which sounds strange, but a fever means that something is going on in his body. We need him to show some signs of side effects in order to know that the transplant is working and that the chemo did it's job. So in some ways, the more side effects the better. Regardless, we are still praying that his body is protected as much as possible from the painful side effects. He is showing some signs of mucouscitous. He has been coughing up huge amounts of thick mucous that has been getting stuck in his throat. It is hard for him to cough it up sometimes, but he always feels better afterwards. The chemo kills the cells in his saliva glands and it causes his spit to become thick and hard to swallow. The Doc thinks that the sores have probably begun to form in his throat. He has started to get small white bumps on the inside of his mouth that may be the beginning of mouth sores. His bum is still free and clear of any sores, rashes, or irritation--and we are praying that this is a side effect that he can escape, because it can be very painful, especially for babies, because of their diapers. He is still holding on to his hair--but that is expected to be gone in the next week or so. The Doc says that the side effects should plateau within the next 5 days, and then will start to get better from there. Now, we are just trying to get through each day with as little pain for baby D as possible. He is getting Morphine for pain and it seems to be working well to control the pain and discomfort, and allows him to sleep. He sleeps most of the day and night. He does not sleep quietly though, and wakes up often. He is a grunter. One of the night nurses calls him her bear. He is quite loud! But he is uncomfortable, and you can tell when he finally settles down, because the grunting quiets to a minimum. Because of all of this, sleep is....well....sleep is close to impossible at night. This is a struggle and a HUGE prayer request for me!! Last night I laid him in his bed a few times, but he could never get comfortable and it broke my heart to hear that "painful" cry of his. Soooooo he ended up sleeping on me or on the side of me most of the night. Please pray that I can sleep with him sleeping on me and waking up so often. God has truly protected me from getting sick over the past 3 months, and please pray that I continue to stay healthy, especially with the lack of sleep. I will try to post some pictures tomorrow, but I have to warn you that he will not be smiling in any of them. I think I have only seen his little eyes open once today, and he was definitely NOT smiling. It is heartbreaking and I am praying for a smile or at least a smirk tomorrow. Thank you for continuing to keep our family in your prayers....we need them, and appreciate it more than you can ever know!!
One more day down.....talk to you tomorrow!!
In His Grip,