Since Collin can't tell me what is wrong, one of the ways we try to figure out if he's in pain is how he responds to me. I'm told that I read Collin well, and I do feel that we have a strong bond. If I stay calm, and am reassuring to him, he can be calmed down for many procedures. He has become very good at participating in his respiratory treatments, having his vital signs taken, even having the dressing over his Broviac changed, which is not the quickest procedure. But I just hold his hand and talk to him, and he lays very still for the whole thing (at least he has so far; now that I've said this, he'll make a liar out of me!) If I absolutely cannot calm Collin down when he is upset, it tells me that something is truly not right with him.
Monday night, it was very difficult to get Collin to relax and go to sleep. He was exhausted, and he desperately needed sleep, so when a dose of Morphine didn't calm him down, I agreed to a dose of Ativan for him. I hated resorting to giving him a drug to make him sleep, but it was the only way we could get him to rest. Then he woke up Tuesday morning at 3:45. He was very agitated again, and nothing I did seemed to help. Again we tried Morphine, but it didn't help, so again we tried the Ativan. At least after that I could actually get him to calm down. I took a small dose of Ativan twice to help me sleep after my brother died, and I hated the way it made me feel, so I stopped taking it. If it makes Collin feel the same way it made me feel, it's not something I want to have to give him; I think it makes him look kind of glassy-eyed and not all there.
Collin needed another blood transfusion Tuesday morning, because despite the transfusion on Monday, his numbers were still low. Perhaps that was another reason he didn't seem to feel quite right. He was restless, so I was trying to play a little bit with him; I took out the floor mat that his physical therapist had brought to his room, and tried playing with him on the floor. The Child Life department had brought us some paper and TaDoodles Crayons, so we tried playing with them. Collin had never used them before, and he had a hard time holding them in his left hand the correct way. But every time I tried to help him, he became very frustrated. So, I sat and very slowly used one of the Crayons to doodle on the paper, and Collin watched me. Then he used his right hand to try to turn the crayon the correct way in his left hand, and then he started to draw. I was so amazed that he took the time to observe what I was doing and then tried to correct how he was doing it! So he made his first drawing Tuesday morning. This only lasted a few minutes though, and then he was agitated again. I told one of the nurses that this kind of behavior wasn't normal for him, but she said he was probably just frustrated. Then his physical therapist came, but he was too tired and agitated, and wasn't able to participate well.
That afternoon, he did participate in his Speech Therapy session. The therapist offered him some of my milk on a spoon, and then transitioned to applesauce, which he hadn't wanted to try up until that point. He did great with it, and had no difficulties swallowing. The speech therapist gave me the OK to feed him whenever I wanted; she said I could even offer him some Spaghettios. Collin tired quickly though, so after Speech Therapy, I put him back into bed. His Occupational Therapist came a little while later and played with Collin in his bed for a few minutes. The Music Therapist also stopped by, and played her guitar and sang softly for him; he responded very well, and seemed to relax while she was there.
Later in the day, I had to put the eye patch on Collin. Again the eye patch frustrated him, and he cried and fought the whole two hours. I had been saving the eye patch for the afternoon because I didn't want it to interfere with his therapies; however I began to wonder if therapy would be a good distraction for him while he was wearing the patch.
That evening I tried feeding Collin Spaghettios like his Speech Therapist had suggested. He seemed to enjoy them, but he also seemed to have trouble moving the noodles to the back of his mouth so he could swallow them. He gagged on one, so I ended that feeding. We can try again soon; I see improvements in Collin every day, and he had much better luck nursing today than he's had for a while.
Tuesday night Collin was unable to settle down and go to sleep again. He became too difficult to hold because he couldn't stay still, and I didn't want to drop him. I put him in his bed, and he fussed and rolled and writhed all around, tangling up his tubes and bumping his head on the side rails. I had to call Bill and have him come sit with Collin just so I could take a shower, because he wasn't safe to leave alone. Finally at 9:00 pm, he got his medications (that had been due at 8:00 pm) including Morphine, and Ativan. He finally relaxed and went to sleep.
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