Well, last night was not restful at all, and this morning didn't start any better. Without warning, Chase woke up while it was still dark outside, not sure of the time, and got sick. I'm fairly certain it was the oral Cyclosporine he had taken the previous evening that did it. He hasn't really eaten anything of significance, and now taking meds on an empty stomach that isn't used to food much less chemicals? Not a good combination.
I felt so sorry for him. He looked absolutely miserable. He got back into a restless sleep, but his IV pumps seemed to be going off like every five minutes. Yes, I'm exaggerating, but that is what it felt like. Right about the time, I could feel myself drifting off, either a nurse would come in and need to turn on a light or a beeper would go off.
Honestly, I don't know if it's me, but it seems like every other night around here stinks when it comes to getting a good night's sleep or something resembling it. anyway, I left his nurse know that he had vomited and she gave him some Kytril followed by Benadryl. I knew the Benadryl would be good for him, just so he could at least be knocked out, which it did.
Around 8:00 am, his nurse brought him more Cyclosprine. He has to take two doses a day of 7 capsules each. I could tell he was less than thrilled with the thought of taking it again. There were two other meds he was supposed to take, but he expressed his concern about getting sick again, so Katy told him he could wait another hour. She also gave him another dose of anti-nausea meds.
Chase has been miserable, feeling all over generally not right, and extremely fatigued the entire day. Between this morning and about 3:00 this afternoon, Chase has been suffering from diarrhea. Around these parts, they like to measure everything that goes into Chase (food and beverages) and also his output. He's got these things underneath the toilet seat that cover half of the toilet each, called "hats", inverted hats at least. They're meant to catch his "output". Not only that, but every time he goes to the bathroom, no matter if it is #1 or #2, the nurses are the ones to empty it. They also have to take note of all of its characteristics. I'll let you use your imagination on that one.
Elise, our physician's assistant, came by and spoke with me around noon. I asked her about the diarrhea and she said right now we don't know if it is because of the adjustment his stomach and intestines are going through or if it is a symptom of GVHD. At this point, they are very conscious of any of the latter. She asked if he had any rashes or if his skin was itching, which can be another indicator. His skin is peeling, especially at bath time, but that's a result of the chemo. It's weird actually. It's almost like he's gotten a sunburn from the inside. After bath time, I have to clean out his tub or else the Aveeno oatmeal will stick. Along with the residue, there have been pieces of dead skin he's shed. He made sure to point out the ones that are larger than the others. For some reason, he likes to peel dead skin. Maybe it's a boy thing.
Carissa came by at noon to help him go around and do his laps. He was so wiped, and he asked her for another forty-five minutes, which she gave him. Of course his forty-five minutes weren't completely peaceful. Just because you decide to take a nap around here doesn't mean people will stay out of the room. Lucky for him, Carissa didn't come back until nearly 2:00 PM. He reluctantly got up, but very slowly. We only made it half way around the loop when Chase took a seat in the chair patients can rest in. He leaned over his knees and started crying, begging both Carissa and I to let him go back to his room. I felt awful. Worse than awful.
Now Carissa is persistent, but she didn't push him and I'm glad. I certainly didn't want to push him either. I had tears in my own eyes, too. I could tell he was genuinely upset. We got him back in bed and Carissa asked if she could give him a hug. He said 'yes'. Later, one of the nurses told me how Carissa had to fight tears herself. That's what I love about the people who work here. They're excellent at what they do, and they truly care.
After she left the room, Chase wasn't any better. I asked him if I could cuddle with him and he nodded. I held him and he started crying even more. Poor guy couldn't tell me why. He said he didn't know if he was sad or scared. Then he mentioned that he was really feeling both last night. I knew he was really disappointed when William didn't stay, so I understood him being sad. Also, he's ready to get out of here - past ready. But why he felt scared, I couldn't understand. I simply held him and said whatever words of comfort I could think of.
Once he got to sleep, I started wondering if coming off the morphine was affecting him. It certainly makes him say and do odd things as well as hallucinate, so I wouldn't be surprised if his first day off of the morphine would be a transition day. Oh, and they don't simply turn him off cold turkey. Over several days, they take his continuous drip level down a notch until it's off but he can still use his button. It's after they reach this stage that they will turn it off, however he can have pain meds if needed at any time.
For about two hours, I let him sleep. His Dad was expected to come up and watch a movie with him later in the day, and he needed the rest if he was going to enjoy the visit. I could tell he didn't feel well at all, but he still wanted David to come. I was relieved he decided to come up very early in the evening. Given how Chase was today, I wanted him to be able to enjoy the visit, so earlier was better.
I was also supposed to leave tonight to stay with William and my Mom would come up around the time David planned on leaving. Before his Dad arrived, Chase asked me if I would stay at the hospital. I had a feeling that was coming. I called William to let him know his brother was having a very bad day and asked if he would mind if I waited until Wednesday to come home. He immediately told me that he understood. He's a great kid!! I felt bad that I couldn't come since I told him the previous night I would, but he took it very well.
It was right around eight by this time. I wasn't going to push him to walk any more laps, but a bath was non-negotiable. I think it was around six when his nurse took him off his IV meds completely for the first time since February 11th! They were to hook him back up at ten, but just the four hours of not being tethered had to feel great for him.
Eight o'clock was cyclosprine time again. He asked for Kytril before he took the pills, which meant temporarily going back on the pole, but only for about 30 minutes. He ate a bit of yogurt to get something on his stomach, and then took the meds. Thankfully, he didn't feel sick to his stomach. I got caught up in watching TV with him, and at 9:15 I realized he had to get that bath before they hooked him back up for the night.
He tried to get out of it, which I expected. I was firm though. He even tried to talk me into doing it later that night, which I refused since the tub was already filled. Funny thing was after he got out of the bath and was walking back into the room, he said, "I feel a lot better." I knew he would after relaxing in some warm water. For the rest of the night, he was more alert and talking a lot more. He seems to get a second wind sometimes at night. Where it comes from, I have no idea. He watched a bit of TV between closing his eyes every once in a while for a few minutes.
The best news of the night??? NO FEVER SPIKE!!! Yay!
Since he slept so poorly the previous night, I asked his nurse to see if he could get Ambien, which he did. He took the pills around 10:45, but it was well after 11:00 before he succumbed to the meds. I crawled into bed - his bed since he chose to stay on the sofa, and was there all of fifteen minutes at the most when he asked if I would come stay with him for a while. Let me tell you now, the sofa is not that wide. Then again, Chase only weighs 110. I snuggled in behind him and the next thing I knew it was 6:45 in the morning.
I was very thankful he had a restful night, even more thankful and surprised that I managed to as well. I hope today, Wednesday the 16th, is better for him.
Still taking it one day at a time...
God Bless!
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