SAID BAR
Upon awakening the next morning, he noticed that one pupil was bigger than the other. Now my dad was an EMT for like 80,000 years so he knew enough to know that it was probably pretty serious. But, like any normal person, he freaked out and ignored it. Well, I shouldn't say he ignored it, he did go to the doctor and managed to play down his symptoms so the doctor didn't see the urgency in his predicament and immediately send him to the ER. So, the doctor gave dad a number to call to schedule a brain CT. Which, dad scheduled for like a week later.
So, being Mr Downplay that he is, he casually sent out an email to my brother and I at work and I think it was some retarded joke with a BTW, I'm having a head CT due to dizziness and large pupil have a nice day.
Wait. WHAT?
I picked up the phone and went CRAZY on him. He called the head CT place back after lots of cajoling from his number 1 and had it scheduled for the next day. So, I felt a bit better. Problem was, it was late in the afternoon and it was some stupid satellite clinic and they apparently don't keep on staff a radiologist who could read it. But, any pre-schooler could have been able to tell that there was a HUGE BRAIN ANEURYSM IN HIS HEAD!!
Dad called me at work that next morning and said, "Well I just got the results back and I have an extremely large brain aneurysm."
I instantly feel the need to crap myself, I start bawling and choked out, "What are they going to do?"
"They want me to go to Methodist ER." he said. I told him I would meet him there and he told me not to. Yeah, like I could non-chalantly finish my day at work.
I got in the car and beat him there. I guess I expected Martha (wife) was with him and I was standing in the ER waiting room waiting for him to get there. I called him and he said he was trying to find a place to park. I then spotted him driving through the parking lot by himself. WTF? I couldn't have done that if I were him. Drive myself to the ER after finding out I had a huge aneurysm?? I would have been so freaked out it would have dissected or I would have an aneurysm finding out I had an aneurysm. Or a stroke.
So, we get into the triage area and the nurse is talking to us trying to figure out why we are there. Martha shows up and we get taken down to radiology where they want to do an arterial angiogram to figure out what exactly the annie looks like. (I am going to use annie because I'm too lazy to have to write aneurysm out and be paranoid Im spelling it wrong.) Well, Dr. Berinni tells us its HUGE and because of dad's age and where it is, it would not be in his best interest to clip it or cut it out. But, there is a doctor in Iowa City, Dr. Chaloupka who can do a procedure called a "coil." It is done arterially and he is a great candidate for it.
His annie is 1.6 cm. That is an INCH for those of you who didn't know what a god damn cm was until a month ago. (I'm not that bright.) It is also deep in his brain.
Ambulance ride to Iowa City we go. I think this was a Friday. The doctor we went to see was out of town. So, after consulting with surgeons and radiologists and yelling at some douche bag doctors, we decided that coiling was indeed the best option. The only thing was that the doctor who needed to do it, was out of town. So, they had my dad lay flat, in the dark all weekend as a precaution.
Procedure was done on Monday or Tuesday. I can't remember. But it seemed to be a great success. He came back to Des Moines for rehab. He had a few deficits. He never really could write very well with his left hand after that and he is left handed. He had a slight facial droop and had some problems with perception and fuzziness. But, he came back home.
Towards the end of February he declined in health. He had MAJOR left sided weakness, had some bathroom issues and confusion. No one seemed to be able to figure it out. After some research we found something called Normal Pressure Hydrocephally and after going back to Iowa City, they agreed and put in a shunt. (Pretty sad the doctors couldn't figure it out. Google isn't that tough to use. But I guess they aren't brain surgeons...oh wait.)
He went back to rehab and learned to drive again, bought a corvette and a hybrid car. He had to retire from his main job with disability and dissolve his photography business. He retired from the volunteer fire department after 30 years and started having coffee in the morning with the ladies at the local coffee shop, lunch at the bar and finding whatever he could to keep him busy.
Around November he started getting left sided weakness that just kept progressing. We went to Iowa City and they tried steroids and it didn't work. The head CT showed that he has "perianeurysmal edema." They thought that if they put a stent across the neck of the annie, it should cure that. We had that done and at the same time while in Iowa City, they started him on an experimental drug called methotrexate. Its a chemo drug, but the vascular rheumatologist in Iowa City said that studies had shown that it helps in decreasing swelling.
He said he felt great and he could use his left side again. Martha stayed there with him for a week and then drove him back to Mercy Capital in Des Moines for rehab. He was walking and doing great. Right before Christmas he started getting sick. So tired he couldn't keep his eyes open. He sounded like he had crap in his chest. We thought he had a sinus infection so we kept asking for sinus meds. We usually celebrate Christmas on Christmas Eve and we kept on with the tradition. He couldn't hardly stay awake while we opened presents and he didn't have the strength to open his. He did stay awake to eat the dinner that was brought in for him though. (Of course)
After the 2nd dose of the methotrexate, he really took a dive. He developed sores in his mouth that went down his throat and blood clots in his leg. They had to go in and put an umbrella in his vena cava to protect any clots shooting into his heart. His bone marrow essentially stopped producing cells and he became very weak. He was having issues swallowing. Mercy Capital sent him to Mercy Main where they were so busy they really couldn't give him the care he needed. He ended up aspirating on New Years Eve (What's with him and New Year's Eve??) He ended up in ICU on New Years Day. It didn't look good. We called my brother home from the Outback Bowl.
He had pneumonia from aspirating. (Oh and we found out later he had Legionnaire's disease. the doctors didn't tell us, Warren County Disease Control called Martha. Nice, huh) He was completely unresponsive New Years morning and became better through out the day. A few times, we thought that he was going to have to get put on a vent, but we were able to get away without. Poor guy was too weak to cough anything up and breathed so hard. His blood pressure was all over the place. It was scary. But, he pulled out of it. We discontinued the methotrexate and now he has a complete left sided deficit.
We got out of ICU and spent some time getting stronger at Mercy Main. We are now back at Mercy Capital and it seems his spirit is slowly fading. At first when he was out of ICU he was all psyched and wanted to take us all on a cruise when he got better. Which is good, he was hopeful for the future. Now he is sad and bored. It didn't help that this past weekend we all came down with the flu, so he didn't have many visitors.
Iowa City told us that if the methotrexate didn't work they had some other ideas. Today we seemed to have a bit of trouble trying to communicate with Iowa City as to what the ideas are and can we try them. We seem to have too many doctors with their hands in the kitchen. We know that once his swelling in the brain goes away, he can use his left side. The problem we seem to be finding is this edema isn't an inflammatory response, so anti-inflammatory drugs aren't helping. So, we need to figure out what will and fast. I don't know how much more he can take of this. He is too independent and he has had to lay in bed for too long. I can see he seems to want to give up. But we won't let him!!!
Sorry this is long winded but I needed to catch everyone up. I apologize if my cussing or name calling offends people. This is me telling it how it is in my prospective. If you know me, you know I don't censor myself well and I will try in writing this. But, sometimes I may slip or go on a rant.
I appreciate any feedback or suggestions. Please forward this blog to anyone you might think would like to be kept up on dad's progress. He needs encouragement from all!! He has too much life left to live to give up now!!!!
It is Tuesday January 20, 2008 9:20 pm. I am sitting here in his hospital room watching him snore. He has been sleeping since 6:45. He just wants to disconnect and not deal with all this. I don't know how to help. He told me tonight he couldn't really see the tv anymore. He can't focus. So, what do you do?
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