This morning I left for work before Justin was up. When I got home at supper time, we figured out that he had another seizure just after I left. AND he has been having little daytime "brain blips" that are not comfortable. I thought they were small seizures, but the doctor said he thought they were sleep deprivation.
So off to the (nearby) hospital we went again. They are actually pretty good there, though it is sometimes wild due to it being in the inner city. There were four security guards in the lobby, and they needed them all this time. Crazy. We got kicked out of the room in the ER, due to someone who was bleeding pretty bad. I'm fine with that. We can wait anywhere.
The doctor has to do a workup, then report to Iowa City, then they contact Justin's doctor there, who gets back to Broadlawns, who lets us know what to do. It just takes time. This time, Justin stood up for himself and said, "no IV, unless you have something going in me...", so they didn't put one in. They put soft pads on the gurney, just in case, and made him put on a gown--but with his shorts on. OK, he can handle that.
After waiting a long time, they decided to up his medication...again. Instead of 5 pills a day, it is now 6. Six is the most he can have, from what I hear. That isn't good, they make him tired. He still isn't sleeping much REAL sleep, but tired all day.
Sunday, August 24, 2008
Saturday, August 16, 2008
Good News
We went to Iowa City on Thursday to finally get that next MRI. The new MRI was to show the doctor whether the brain tumor has grown or not. Justin had the MRI scheduled for 8:00 am, so we were up at 5:30 in the morning for the drive over. Then to see the Radiology Oncologist for the results of the test. After that would be an appointment with the Hematology Oncologist for and hour to discuss the tumor, the treatment and anything we wanted to know. That was all set up months ahead.
The MRI went well, if you like that sort of thing. Justin does not appreciate them and would rather sleep through them, but they are too loud! He got headphones and had to listen to Celine Dion and other elevator-style music. Jason and I walked to the cafeteria for breakfast to kill some time. As we were walking back to wait for Justin, there he was, looking for us! So off we went to the cafeteria again, for Justin's breakfast. It was a strange time--wondering if the doctor is going to say, "You are miraculously healed!" or, "Sorry, you only have 3 months to live." You don't want to get your hopes up, yet you want a miracle. And though you don't know what to say, you do find words or even jokes to pass the time until you see the doctor.
As soon as we arrived at the doctor's office, they checked him in and sent him to have blood drawn. Again. He came out of the MRI with a band-aid, too. He takes it in stride. He went for vitals and then to the exam room. We sat in there for about 10 minutes until two student doctors came in to ask a bunch of questions and wrote notes. They gave him a quick physical check for his neurological fitness, I guess. They left and we waited again.
The long wait was over and the doctor and nurse came in. The doc said the MRI looks good, not any change to speak of. He was pleased with Justin's general health. He went through some information about seizure activity, and warned Justin that he needs to get proper sleep. Sleep deprivation will bring on seizure activity, so he needs to sleep well. Then he told us that since the MRI looks good, we would not need to keep the appointment with the hematology oncologist. He told us that Justin would be fine to have almost any job, and he has few restrictions. Justin will have another MRI in 3 months. He was free to go. It was a relief, and a blessing.
Keep up the prayers, friends. Justin has a long road ahead of him and needs to be sheltered in the arms of his Father. But for now, it is life as usual.
The MRI went well, if you like that sort of thing. Justin does not appreciate them and would rather sleep through them, but they are too loud! He got headphones and had to listen to Celine Dion and other elevator-style music. Jason and I walked to the cafeteria for breakfast to kill some time. As we were walking back to wait for Justin, there he was, looking for us! So off we went to the cafeteria again, for Justin's breakfast. It was a strange time--wondering if the doctor is going to say, "You are miraculously healed!" or, "Sorry, you only have 3 months to live." You don't want to get your hopes up, yet you want a miracle. And though you don't know what to say, you do find words or even jokes to pass the time until you see the doctor.
As soon as we arrived at the doctor's office, they checked him in and sent him to have blood drawn. Again. He came out of the MRI with a band-aid, too. He takes it in stride. He went for vitals and then to the exam room. We sat in there for about 10 minutes until two student doctors came in to ask a bunch of questions and wrote notes. They gave him a quick physical check for his neurological fitness, I guess. They left and we waited again.
The long wait was over and the doctor and nurse came in. The doc said the MRI looks good, not any change to speak of. He was pleased with Justin's general health. He went through some information about seizure activity, and warned Justin that he needs to get proper sleep. Sleep deprivation will bring on seizure activity, so he needs to sleep well. Then he told us that since the MRI looks good, we would not need to keep the appointment with the hematology oncologist. He told us that Justin would be fine to have almost any job, and he has few restrictions. Justin will have another MRI in 3 months. He was free to go. It was a relief, and a blessing.
Keep up the prayers, friends. Justin has a long road ahead of him and needs to be sheltered in the arms of his Father. But for now, it is life as usual.
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