A Bad Fall

While worshiping at church with Jason and Tammy tonight, Justin felt very dizzy. He had been standing for quite some time and began to feel the dizziness coming on. Each moment that passed made him believe that it was almost over, that it would pass and that he would be OK. However, that didn't happen. He passed out, his knees buckled, and he fell right into the wall, head first. He was out cold. He was at the back of the church, so not very many people saw it, but those who did came running. They all wanted to call for an ambulance, but Jason let them know that was not necessary, we would take him to the doc if needed. Justin came to, and wondered what he was doing looking at the ceiling.

Other than a killer headache, plus a nice goose egg on the side of his head, he is fine now. But we WILL be calling the doctor first thing in the morning to see if we can get this dizziness figured out.

A New Symptom

The new medicine seems to be working. Justin says now that he feels dizzy just after taking his meds, but we hope that will go away. He is much happier and has more energy now.

The Main Doctor

Justin's main doctor came in and told us that he looked at the MRI and the tumor did not have a "huge change". We have no idea what that means, but will take it as good news. He said in light of the increase in seizure activity, there were two options; add another anti seizure medication or start radiation. Radiation would be 5 days a week, for 5 or 6 weeks, 120 miles from home. Justin said right away that he would like to try the meds first. The doctor agreed and so did I.

Great news; after being on the medicine just one day, all seizure activity stopped. Justin seems like his old self again and is much happier. He is still sleeping a lot and says he is dizzy all day, but that will probably go away as the doctor adjusts the amounts of each.

Results and Confirmation

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!

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.

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.

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.