The last few weeks, we can't seem to get Justin out of the house at all. He does not want to leave at all. He is even a little nervous about going to church. It has been almost a week now. He has more and more of the daytime brain blips and they seem to be stronger. Yesterday he told his brother that he wasn't going to do much until he gets the MRI and some answers.
We think he has lost about 40 lbs since April (probably due to stopping all the soda pop). This is not a recommended diet plan.
Friday, September 26, 2008
Thursday, September 18, 2008
Brain Blips
Justin's daytime "brain blip" activity has been getting worse. He will be chatting, goofing off, just being himself, and all of the sudden he is quiet, looking off to the side, sort of rigid with his eyes in a blank stare. I have been more and more convinced that this is seizure activity, so I called the nurse in Iowa City to express my concern. I told her that he was losing interest in everything; no longer pays much attention to sports, being out of the house, eating or even watching TV. I really knew this was worsening when I made homemade cookies and he didn't even have one right out of the oven! That was a first!
I let her know that this was not really acceptable and not a good way to live when you are only 25 years old. I wondered if his medicine dosage is wrong, or is it the wrong medicine for Justin? And can we make an appointment with a neurologist to learn more about the seizures? She told me she would get with me later.
I called Justin to tell him about it, and he said his eye had been hurting earlier in the day. I was a little worried, so I booked him with one of the eye doctors where I work. Thank the Lord, he had one of his brain blips while she was right there in the exam room with him. She is convinced it is seizures, too. NOW I have some credibility when talking to Justin's nurse. When she called back, I related what had happened with the eye doctor, and she let me know that Justin's doctor wants to see him for another MRI on Monday morning, Sept 29. That is 2 months early, but we believe it is necessary.
I let her know that this was not really acceptable and not a good way to live when you are only 25 years old. I wondered if his medicine dosage is wrong, or is it the wrong medicine for Justin? And can we make an appointment with a neurologist to learn more about the seizures? She told me she would get with me later.
I called Justin to tell him about it, and he said his eye had been hurting earlier in the day. I was a little worried, so I booked him with one of the eye doctors where I work. Thank the Lord, he had one of his brain blips while she was right there in the exam room with him. She is convinced it is seizures, too. NOW I have some credibility when talking to Justin's nurse. When she called back, I related what had happened with the eye doctor, and she let me know that Justin's doctor wants to see him for another MRI on Monday morning, Sept 29. That is 2 months early, but we believe it is necessary.
Monday, September 8, 2008
Not Again!
I woke up this morning with that awful, familiar sound. Justin was having a seizure. This one was pretty bad, and I felt so sad for him. He didn't breathe for quite a while--maybe 30-45 seconds (it just SEEMS like an hour!). He came out of it in a little while and we talked about it. He was VERY disappointed when I told him that we must go back to the hospital. What a discouragement that the medicine doesn't seem to be working like we thought it should.
We got to the hospital and got right in Triage. That was different. And they called him for the pretesting right away, which was nice. And they called him into the ER quickly. That just does not happen. Well, that was where the good ended. They tried again to put in an IV, and have him put on a gown. He again turned them down, but they still put the pads up on the gurney in the room. The doctor was a new one, and didn't really know what to do. We had to tell him the whole story; what is going on, who to call, what to ask, etc. He left to talk to his supervisor. When they came back, we had to go through the whole thing again. "We are not here for treatment, just for documentation that he had another seizure. Iowa City will want to know."
So off they went again. In a long time, the younger doctor came back and said they couldn't reach Justin's doctor, so they talked to "someone on call in another department there," who told them to put Justin on an ambulance for Iowa City. They said he needed to be seen there. I said "no, that is not necessary" and the doctor looked at me like I was putting my child's life in extreme danger. I explained that Justin has only had about 7 seizures since April, all occurring in his sleep in the early morning, and all weeks apart. We were just at Broadlawns for documentation. The doctor said I might have to sign a paper saying that I refused the ambulance for Justin and I said that was fine. So off the doctor went, again.
When he returned, he evidently had read through Justin's file and he was much more relaxed. He said they were fine with discharging him. Good.
We got to the hospital and got right in Triage. That was different. And they called him for the pretesting right away, which was nice. And they called him into the ER quickly. That just does not happen. Well, that was where the good ended. They tried again to put in an IV, and have him put on a gown. He again turned them down, but they still put the pads up on the gurney in the room. The doctor was a new one, and didn't really know what to do. We had to tell him the whole story; what is going on, who to call, what to ask, etc. He left to talk to his supervisor. When they came back, we had to go through the whole thing again. "We are not here for treatment, just for documentation that he had another seizure. Iowa City will want to know."
So off they went again. In a long time, the younger doctor came back and said they couldn't reach Justin's doctor, so they talked to "someone on call in another department there," who told them to put Justin on an ambulance for Iowa City. They said he needed to be seen there. I said "no, that is not necessary" and the doctor looked at me like I was putting my child's life in extreme danger. I explained that Justin has only had about 7 seizures since April, all occurring in his sleep in the early morning, and all weeks apart. We were just at Broadlawns for documentation. The doctor said I might have to sign a paper saying that I refused the ambulance for Justin and I said that was fine. So off the doctor went, again.
When he returned, he evidently had read through Justin's file and he was much more relaxed. He said they were fine with discharging him. Good.
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