September 28, 2017 10:00 pm
The night before last Craig Hospital had a fire drill. The alarms went off the lights blinked. It was loud, and for Josh it was scary. Before I left for the night, he said, "Don't lock my shoe." What he meant was, "Don't lock me in my bed because if there is a fire, I won't be able to get out." I was sad that he was scared, but happy that he figured that out. Anyway, since then Josh has been afraid of being zipped up in his bed. (And I don't blame him.)
Josh woke up at 4:30 this morning and couldn't go back to sleep. When I got to his room at 7:40, the blinds were closed, the lights were off, and he was wide awake, locked up in his bed. I opened his bed, sat on the side, and rubbed his arm. He was asleep almost immediately. Because his first class was at 8:00, the nurse came in and woke him up after maybe 2-3 minutes. I helped the nurse get him dressed, and by the time we were done dressing him, it was 8:07. So Josh and I went to OT.
Therese in OT gave me details of what to do and what to look for when helping Joshua with eye exercises.
Josh fell asleep in class multiple times. She finally gave up and we went back to Josh's room where the nurse had put a tray with breakfast on it.
Josh ate breakfast (2 Ensures and 1/2 an English muffin). Then he threw it up all over. He has no warning, it all just comes up. The nurse and I changed his clothes, I brushed his teeth, and we were off to PT.
Barb spent only 30 minutes with Josh. She ran through a test of 10 exercises (e.g., stand on one leg, stand in one place with your eyes closed, etc.). She said that she believes Josh would have performed much better if she'd tested him on Monday because she sees a downturn since the shunt was adjusted. I asked her if that was normal. She said it isn't; when someone gets his shunt adjusted, he usually just shows an upward trend. And when he plateaus, the shunt is adjusted again.
After PT, I wanted to take Josh back to his room so he could sleep, but Barb wanted him to ride a bike. I told her that he would fall asleep riding the bike and that I thought rest would be more beneficial. She put Josh on a bike and said he'd be fine. When I returned 25 minutes later, Joshua was slumped over in his wheelchair, sleeping, still strapped to the bike. (I wish I'd had my camera to take a picture.) Poor guy.
So I dragged him back to his room, called the nurse, and we got him into bed. It was 11:30 by the time we were done. At 11:41 a phlebotomist came in to give Josh an IV. I was confused. She said that all she knew is that Dr. Makley ordered a stat CT and he needed contrast. She took 10 minutes to finally put the IV in. And after fishing around inside his arm for awhile, she pulled the IV and said, "Sorry, buddy. It blew. It was my fault. We'll try the other arm." In my irritation I calmly said, "If you can't do it, don't even try. Just go get someone else." She said, "I can do it!" I said, "I just don't want my son to be poked more than he has to, so if you can't do it, get someone else." She said, "He is a great vein in the other arm. I can do it!" So she tried. It didn't work. She fished around in his arm. She couldn't find the vein. It kept going until I couldn't take it anymore and told her to get someone who could place the IV. So she did. And that person couldn't place the IV either. Finally, the fourth time, the phlebotomist said, "We could do it in the crick of his arm, but that will hurt." I said, "It can't hurt more than stabbing him three times with a needle for no reason." She agreed and finally placed the IV. Just then transport came to take him down for the CT scan. I snuck this picture while we waited.
You can't expect a good picture when it's being taken surreptitiously.
For lunch Josh had a chocolate milk, one bite of ham, and 8 french fries. He was about to eat two slices of strawberries, but he fell asleep before he could get it into his mouth!
So I put him to bed and canceled his next PT class.
I did wake him up 40 minutes later to go to ST. I came back to his room to do some work and after 20 minutes the pathologist wheeled him into the room. He'd fallen asleep in class. So I put him back to bed. He slept 5 hours.
He got up for dinner, which he threw up. I gave him a shower, helped him brush his teeth, combed the glue out of his hair, then the nurse and BA put him back in bed. He was asleep within 5 minutes.
The night before last Craig Hospital had a fire drill. The alarms went off the lights blinked. It was loud, and for Josh it was scary. Before I left for the night, he said, "Don't lock my shoe." What he meant was, "Don't lock me in my bed because if there is a fire, I won't be able to get out." I was sad that he was scared, but happy that he figured that out. Anyway, since then Josh has been afraid of being zipped up in his bed. (And I don't blame him.)
Josh woke up at 4:30 this morning and couldn't go back to sleep. When I got to his room at 7:40, the blinds were closed, the lights were off, and he was wide awake, locked up in his bed. I opened his bed, sat on the side, and rubbed his arm. He was asleep almost immediately. Because his first class was at 8:00, the nurse came in and woke him up after maybe 2-3 minutes. I helped the nurse get him dressed, and by the time we were done dressing him, it was 8:07. So Josh and I went to OT.
Therese in OT gave me details of what to do and what to look for when helping Joshua with eye exercises.
Josh fell asleep in class multiple times. She finally gave up and we went back to Josh's room where the nurse had put a tray with breakfast on it.
Josh ate breakfast (2 Ensures and 1/2 an English muffin). Then he threw it up all over. He has no warning, it all just comes up. The nurse and I changed his clothes, I brushed his teeth, and we were off to PT.
Barb spent only 30 minutes with Josh. She ran through a test of 10 exercises (e.g., stand on one leg, stand in one place with your eyes closed, etc.). She said that she believes Josh would have performed much better if she'd tested him on Monday because she sees a downturn since the shunt was adjusted. I asked her if that was normal. She said it isn't; when someone gets his shunt adjusted, he usually just shows an upward trend. And when he plateaus, the shunt is adjusted again.
After PT, I wanted to take Josh back to his room so he could sleep, but Barb wanted him to ride a bike. I told her that he would fall asleep riding the bike and that I thought rest would be more beneficial. She put Josh on a bike and said he'd be fine. When I returned 25 minutes later, Joshua was slumped over in his wheelchair, sleeping, still strapped to the bike. (I wish I'd had my camera to take a picture.) Poor guy.
So I dragged him back to his room, called the nurse, and we got him into bed. It was 11:30 by the time we were done. At 11:41 a phlebotomist came in to give Josh an IV. I was confused. She said that all she knew is that Dr. Makley ordered a stat CT and he needed contrast. She took 10 minutes to finally put the IV in. And after fishing around inside his arm for awhile, she pulled the IV and said, "Sorry, buddy. It blew. It was my fault. We'll try the other arm." In my irritation I calmly said, "If you can't do it, don't even try. Just go get someone else." She said, "I can do it!" I said, "I just don't want my son to be poked more than he has to, so if you can't do it, get someone else." She said, "He is a great vein in the other arm. I can do it!" So she tried. It didn't work. She fished around in his arm. She couldn't find the vein. It kept going until I couldn't take it anymore and told her to get someone who could place the IV. So she did. And that person couldn't place the IV either. Finally, the fourth time, the phlebotomist said, "We could do it in the crick of his arm, but that will hurt." I said, "It can't hurt more than stabbing him three times with a needle for no reason." She agreed and finally placed the IV. Just then transport came to take him down for the CT scan. I snuck this picture while we waited.
You can't expect a good picture when it's being taken surreptitiously.
For lunch Josh had a chocolate milk, one bite of ham, and 8 french fries. He was about to eat two slices of strawberries, but he fell asleep before he could get it into his mouth!
So I put him to bed and canceled his next PT class.
I did wake him up 40 minutes later to go to ST. I came back to his room to do some work and after 20 minutes the pathologist wheeled him into the room. He'd fallen asleep in class. So I put him back to bed. He slept 5 hours.
He got up for dinner, which he threw up. I gave him a shower, helped him brush his teeth, combed the glue out of his hair, then the nurse and BA put him back in bed. He was asleep within 5 minutes.
This anxiety over what's happening in his brain is terrible. If everyone notices a downturn, isn't that a clear message something is wrong?! This scan ought to have been done yesterday, right?
ReplyDeleteI'm mad at the phlebotomist for fishing around over and over. Get over your ego, girl!
If I'm frustrated, I can only imagine what it's like being there watching it all happen in slow motion.
Yes! Emily, you said it for me. G'ma
ReplyDelete