I felt like we really saw a miracle today in the changes that we saw in Randy.
The morning was a little tough. As I said in the previous post, Randy started out agitated today. He was agitated we wouldn't get him up to use the bathroom. He kept asking us and we kept trying to explain to him that he couldn't get up and needed to go right where he was at. He saw the sign on the bathroom door and said he wanted to where "Call Don't Fall" is (which is the sign on the door). At one point, he said "I want to get up." and we said "The doctors's say no", and he responded "Well, they need to say yes".
We finally got him to go ahead and go where he was at and from that point on, it stopped being as much of an issue. There were a few times he did ask to go and I would explain to him again that he goes where he was at, tells me when he is done, and I call the nurse to come clean him up, and he seemed to understand that and follow the process. I think it is just absolutely amazing he was able to tell me when he needed to go and when he was finished.
Another irritation for him today was the temp in the room. As I stated earlier, we tried turning the temperation down and that really helped. The thermostat in his new room was higher than his last room. At one point, someone asked him how he was doing and he was starting toodo better and then he went on to explain that the last couple of days he wasn't feeling too good after the transfer (I think by transfer, he is referring to moving rooms, but I don't know for sure). It just amazed me he was able to put that thought together and communicate it.
Another big irritation for Randy is still his neck brace. When we walked in today, he had gotten himself out of it. According to the nurse, she had just put it on a few minutes earlier. He was able to take it off even beeing fully restrained.The nurse told the doctor that Randy had been taking if off several times so the doctor put in a request to up Randy's dosage of bromocriptine, which is used for storming/agitation. I wasn't in the room when the doctor told the family what he was doing and explaining why, so when I came back I said I wanted to talk to him. In the meantime, I went down and researched the drug and one side-affect is loss of alertness, the exact opposite of what I want for Randy. Also while I was out of the room today, the restraint specialist came in and said she wanted to up Randy's dose of Seroquell, which is the medication we just argued to get taken down.
We found out last night, though, that the plan is to move Randy into a room right by the nurses station and remove his restraints to see how he does, even though all of the nurses that have worked with Randy have said that he is not ready. I find it funny that the restraint specialist recommends highering medications so that we can take off the restraints. When the doctor came back to talk to me about the bromocriptine, I told him I am not okay with any of Randy's medications being upped, period. I suggested spreading out his nighttime medications so that they would last longer throughout the night, but no increases. He was concerned about Randy getting the neckbrace off. Randy has only gotten the neckbrace off when we are in the room during times he conned someone in the room into taking off restraints. During the nighttime is the only concern because we are not there. I will be there every night to watch him and make sure he doesn't take it off before I let him increase his medications. The doctor put a note on Randy's file stating that the family doesn't want any medications increased.
Throughout the day, Randy expressed that he did not want to be alone. When his mom or I would tell him we were going to step out for a bit (ususally when they were changing him or moving him to/from his chair), he would say "Not to long" or, once, he said "Don't go to far for too long". He really wanted us there in the room with him today.
They took Randy's catheter out again today (they have tried several time without success to keep it off). It was funny, right after they took it out, he went to the bathroom and he laughed and said "That felt weird".
At one point during the day, Randy said "I want to believe that I'm getting better". That says to me that he feeling the frustration, but he isn't giving up. I saw him work so hard today.
Once we worked past the frustrations, which really just took us repeating the resolution he could have for what he wanted, it opened up into a very great day. Randy's mom was asking him if he remember that he was in band back in school. I asked him if he remember what instrument he played and he answered correctly ~ the flute (he and I were actually in band together, both playing the flute. That is where things first got started with us).
Randy seemed to me to be getting bored today. He was so with it but didn't have anything to do. I took out one of the games that was given to us in a care package. I don't even know how to play the game, but it has cards with words on them. I started flashing the cards at him and he started reading the words. He did an amazing job. He did struggle with some words, but I could tell in his mind that he was working them out. There were a couple of times I asked if he wanted help. The first time he said yes and I sounded out the word with him. The second time, he said no and I saw his eyes really concentrating and he finally got the word. He got small words like "art" and he did excellent with long words like "encyclodpedia". This game entertained him for awhile and I feel like we were doing something positive for him. I think it was very good for him. Someone we spoke with this evening from the church I attend has a son who was in Harborview 2 years ago with a head injury. It was great talking to her and hearing about some of their experiences. She said she had some flashcards she will give us and we stopped and picked up some to start working with tomorrow if he is alert enough.
It was just so great. I think it all wore him out too. He was too sleepy tonight to eat very much dinner. Oh, which is another bit of amazing news. Randy was approved for any foods he wants. He has passed all of the swallow tests (Yeah!). He wasn't seeming to like what was brought for him to eat so they gave us vouchers and I was able to go downstairs and pick out things I thought he would like up to a certain dollar amount. That seemed to work quite well for him. He even like the dinner, but couldn't keep his eyes open enough to eat very much. At one point, I asked him if he could open his eyes and he responded "No, but I like your question."I got him to eat a bit of everything and he did stay awake enough for vanilla ice cream, which is a favorite of his, but then when I snuggled up next to him to watch a bit of tv, he crashed out.
Today started out a bit rough, but it turned out to be such a great day!
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