Whenever we go to the hospital, Justin is seen by several doctors. First the nurse or assistant, then a resident doctor or two, then his "real" doctor. Usually by the time we get to see his regular doctor, we have figured out exactly what we want to say to him, and what questions to ask. The nurse and the residents spend lots of time asking questions, giving answers, and just making sure everything is OK.
Monday morning we left home at 4:45 am so that he would be there for his 7:00 MRI. The MRI went well and was fast enough that we could eat breakfast in the cafeteria before seeing the doctors.
The nurse went through some neuro testing and asked a bunch of questions. Then the resident came in and asked about the same questions and did some more tests. I got to ask him all of the 15 questions our family had written down. He answered some and then told us to ask the doctor the rest. One thing that he DID answer for us that encouraged us so much, was about the seizure activity. We pretty well knew that the small daytime episodes were seizures, but he confirmed it. I asked him if the seizures were controlled to the best of our ability and he said, "No. Having NO seizures means we are controlling them." Wow. That was what we needed to hear! I believe it was the greatest thing we learned the whole time we were there. Knowing that they are working to make sure he doesn't have ANY seizures made a big difference in Justin's demeanor right away. He had a whole new attitude on life!
Wednesday, October 1, 2008
Friday, September 26, 2008
Housebound
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.
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.
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.
Sunday, August 24, 2008
Troubles Again
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.
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.
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.
Sunday, July 6, 2008
Family Camp Weekend
The Camp where Justin works decided this year to invite camp staffer's families to camp for the July 4th weekend. I went up for three days and had a great time. The camp was open for whatever we wanted to do, and the staff and families were all wonderful. Everything was available for the families to be able to enjoy each other's company and have a great weekend.
Along with the usual camp activities, we got to go out on the lake several times, play all sorts of games, watch a boat parade, go to town twice, eat out at a sweet little place on the lake, fight mosquitoes (!) and get to know other families better. There were bikes everywhere and a lot of us did the six mile trail around the lake. Justin and I almost won Jeopardy for our team, but lost at the last minute, because our main opponent had written some of the answers! We'll get them next time...
Along with all the fun, we had several heart-to-heart talks about life and death and how we see things. It was a great place to be able to do that.
This morning we went to church at a little church right on the camp property. It has been there since the mid-1800s and still has services on Sundays, at least during the summer. So many people came that we had to bring benches and place them alongside the windows on the sides of the church. It was a beautiful time, sitting outside with the big trees, green grass, gentle wind, birds, and the sounds of the people and boats on the lake. We sang some patriotic songs and had a good sermon. It made me think of what the olden days must have been like back then.
We were hoping Justin's new nephew would be born during our weekend, but it didn't happen. He could have been born on the holiday of the 4th, Justin's birthday on the 5th, or my birthday on the 6th. Guess he wanted his own day, and that's OK!
Justin feels fine most days and has been doing very well. Camp has been good for him. Now he is in the middle of the summer and looking ahead to what job will be available for him this fall. Please pray that he will find the right job. Thanks.
Along with the usual camp activities, we got to go out on the lake several times, play all sorts of games, watch a boat parade, go to town twice, eat out at a sweet little place on the lake, fight mosquitoes (!) and get to know other families better. There were bikes everywhere and a lot of us did the six mile trail around the lake. Justin and I almost won Jeopardy for our team, but lost at the last minute, because our main opponent had written some of the answers! We'll get them next time...
Along with all the fun, we had several heart-to-heart talks about life and death and how we see things. It was a great place to be able to do that.
This morning we went to church at a little church right on the camp property. It has been there since the mid-1800s and still has services on Sundays, at least during the summer. So many people came that we had to bring benches and place them alongside the windows on the sides of the church. It was a beautiful time, sitting outside with the big trees, green grass, gentle wind, birds, and the sounds of the people and boats on the lake. We sang some patriotic songs and had a good sermon. It made me think of what the olden days must have been like back then.
We were hoping Justin's new nephew would be born during our weekend, but it didn't happen. He could have been born on the holiday of the 4th, Justin's birthday on the 5th, or my birthday on the 6th. Guess he wanted his own day, and that's OK!
Justin feels fine most days and has been doing very well. Camp has been good for him. Now he is in the middle of the summer and looking ahead to what job will be available for him this fall. Please pray that he will find the right job. Thanks.
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