As far as the infection went, Randy seemed to be doing much better by the end of the evening. Our frustration today was with the dosage of medications he is receiving.
Today, I got to the hospital a little later than normal, so they had already given him the 50 mg of Seroquel. He was completely out and his blood pressure and pulse were rather low. They weren't alarmingly low, but "need to be watched" low. The medication was given at 9 am. By 1:30, the Physicians Assistant was trying to wake him up ~ he had to shake Randy a bit to rouse him to get him to start waking up. Throughout the day, we voiced our concerns over the dosage of the medication. Our nurse talked to the doctor about it, but the doctor just said they would take a look at it. The nurse could tell I was very concerned and since the doctor wasn't that responsive, he had the Physicians Assistant come in, talk to me, and check out Randy. The PA came in a few times and asked me what I have been observing of Randy's reaction to the medication. But even with all of that, the dosage was not changed throughout the day.
When Randy finally did wake up, he seemed pretty alert, especially a little later in the evening when he was fully awake. Today, he asked for his pants. He said he wanted to change and he wanted to go. He talked to his dad for awhile and was able to respond appropriately to the things that his dad was saying. Then, when Cass came back from the beach (thank you Ms Bev for taking her away this week!), we her on the phone with Randy. She said hi and he responded with "Hi kido", which is what he calls her. I also heard him ask her what the best part was, which is so something he would say. A little later, when I asked him his name he said it very clear. When I asked him my name, he answered correctly (which is definitely a plus for him!). It was so nice to get to talk to him. Then they came in with his 5 pm medicine. We voiced our opinion that he didn't need it because he wasn't agitated. The nurse let us know he had talked to the doctor but they had just responded that they were looking into it and they hadn't changed the medication. I knew the doctors were on rounds at that time, so we could not speak to one of them. Less than 2 minutes after the medicine was given, Randy went to sleep. It was so hard. He was there, alert and talking to us, and because of the medication, it was gone.
When the night nurse came on, I again voiced my concern over the medication, mentioning that I had noticied a drop in blood pressure after it was taken. Though the nurses seem to be of the opinion that the drop in blood pressure is not related, I really think it was. She was great, though. She said that when the doctors came back after rounds to talk about the patients, she will talk to them about the medications and mention all we told her, which was that we felt he really needed the higher dosage yesterday and the day before because of the agitation, but that today he really didn't need it, and we felt the blood pressure lowering was related to the medication. She told us that she is going to hold his last dosage and note that it was per family request, so he will not get it tonight. I plan on getting to the hospital first thing tomorrow morning and requesting to talk to the doctor.
I also did some research on the drug they are giving him and I didn't care too much for what I found. The lowering of the blood pressure can be a side affect. In 2004, there was also a class action lawsuit because the drug has been linked to causing diabetes. Randy's biological grandfather had diabetes, so he might already have a risk factor from genetics, he doesn't need the added risk of it from drugs. I wrote down all of my findings to go over with the doctor tomorrow. At the very least, I want a lower dosage of whatever drug they use. I understand giving him the medication when he is agitated because his agitation can cause swelling in the brain and we don't want that. But I don't want him to be so sedated that he can't show us the progress he is making every day.
I am again reminded of all of the people that don't have family members there to be advocates for them to push the doctor's for answers and question the things they have done or aren't doing. My heart really goes out to those people. There are nurses out there, like our Becky, who I know fights for her patients and will push the doctors and get things done, but there are nurses who go in, do what is on their little sheet and then move on to the next person. Everyone needs someone there! Randy is lucky to have a whole group of people ~ us there at the hospital and all of you reading this blog who have stepped up and helped us by researching things, contacting people you know at the hospital, and giving us advice from personal experiences.
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