I'd like to start off this post by saying we've had great improvement. Emphasis on "like to say". Chase is in his second or third (I've lost count) of high fevers reaching 104 degrees!! Yes, this is mounting frustration you are hearing...reading. We haven't seen signs of his blood counts coming in just yet, but his lips along with the bleeding in his mouth do seem to be improving.
Engraftment, when the new marrow starts to grow, usually starts around Day +10 or a bit later. Once that begins, his counts should really start showing a steady rise, especially since he is given Neupogen daily to encourage the marrow to grow. He is still receiving platelets quite often. Half the time it's done in the middle of the night and I'm not even aware of it.
I had a very difficult time getting to sleep last night. It always seems to be the case when I come back to the hospital, but last night was particularly difficult. For one, I'm still struggling with my sinuses. Any time I leave the filtered hospital air, within hours I'm feeling the pain and pressure. Also, I think with his fever being so high, I am even more on guard than usual in case he may need me. I don't believe I got to sleep until after 3:00 am. I tried before then to sleep but tossed and turned and Chase also called for me around 3:00 to tell me he was ready for his bath. He told me to go ahead and get it ready. He had no idea what time it was.
Unfortunately, about two hours later (5:00 am) I woke up when I heard what sounded like water running. We have a sink both in the bathroom and in the hospital room, too, so I thought it was that. Only I opened my eyes and realized it was Chase standing up and I knew right away he was the source of the sound. With all of the drugs he is on combined with this high fever, I don't believe he knows which way is up. He is hallucinating quite a bit, forgetting things, and attributing sounds to those he might hear as if he was at home. All of this led to his thinking he was in the bathroom when he wasn't.
It turned out to be worse than I thought. I turned on the bathroom light and urged him to come to me, and that's when I realized that he had an absolutely horrible case of diarrhea. Honestly, it scared me more than anything else. One of the symptoms of Graft Versus Host Disease (GVHD) is diarrhea. I do expect him to experience some symptoms of it since up to 80% of unrelated matched transplants have it, but I felt it was too early. Between my fatigue and his health issues, I about lost it right there.
But this is one of those times, when I had to box those feelings away because I had more pressing matters to deal with. Once I got him in the bathroom and started the bath water running, I ran out to the nurses's station, which luckily is about 3 strides outside his door, and told them we had a huge mess. It took me and three nurses about 45 minutes to an hour to get everything cleaned up, including Chase.
And when I say cleaned up, everything that could have possibly been contaminated had to be cleaned by hand with very strong anti-bacterial wipes. These are so strong, I never use them without putting on gloves first. His IV pole, the IV tubing (and there is a lot of it), the wheels of the pole, the electrical cords for his pumps, his entire bed including the plastic covering the cushion were sanitized. Plus, they had to call in someone to clean the floor in the room and in the bathroom.
When your day starts out like this, you simply want to crawl up into a ball, cover yourself up with a blanket and cry or go to sleep...or both. I did shed a few tears after it was over with, but I didn't give into them. I won't do that in front of Chase and if I do, I know it will be like a flood gate. So, I'll take a raincheck for now and save it for later.
And I did get a little sleep. About as much as the space between these letters. The typical parade of doctors made their rounds, so sleeping in a bit later or getting any type of reprieve was not to be had.
But there was one glimmer of positive news today. When Elise and Dr. Haight were in here to see Chase, he had a rash appear and then sporadically disappear on his head, neck, arms, stomach, and legs. I've seen this before when he gets blood and on the day he received the new marrow - both times. All of the doctors seemed excited to see the rash. They kept pointing to where it was showing up and then disappearing less than 30 seconds later. Dr.Haight said in a sing-song voice, "This could be his counts coming in."
And there was my glimmer. I do like to hear about counts coming in, which means engraftment, which means white blood cells and neutrophils and best of all HEALING!
Honestly, I don't recall much else that happened this day, and probably for good reason. This past week and a half have been miserable, and I am still left to wonder when the end will be in sight. When will we he get a break from this blasted fever??
Something has to give, and I pray the fever gives out before I do.
Taking a deep calming breath and taking things one day at a time.
God Bless!
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