Monday, January 4, 2010

The Road that leads to Mayo

It was a long and lonely road, not much to see other than the corn growing, and the clouds changing shapes. I sat in my truck wondering if I was going to stay awake driving through the state God had forgotten. Iowa was a place where even Angels feared to tread........ I thought that beginning was appropriate, considering the title. I did forget something in "The Beginning III" that I want to add in this one. While we were at the hospital, one of the two neurologist had the nerve to tell us that his hand twitches were not seizures. She told us that they were ticks, or a form of tourette's. Trust me at that point we had had enough, it felt like everyone thought we were making a bigger deal out of this than we should be.

The next week was filled with so much frustration, why do we have to wait 3 months to see one of the two dumb neurologist (I know kind of an oxymoron) that don't think he has seizures. And it would be 8 months before we could see the best neurologist in the city. Then it hit me, the Mayo Clinic, one of our good friends Travis had always talked about the Mayo Clinic. He lived in Rochester, Minn. his entire life, and would always tell us how great it was. He would tell us stories of how Middle Eastern Prince's would travel to Mayo, or how the President would get checked there. I always made fun of him, but now I needed to know if it was real or not.

Sarah did all the hard work, she researched, and made the phone calls that needed to be made. Insurance said that they should cover it, and our pediatrician thought it was worth a shot. My question was, "If it's one of the best hospitals in the nation, how long is the waiting list to get in?". After all, we were looking at a 3-8 month long wait in Omaha. The answer we received was 2 weeks, 2 stinkin weeks. We were so relieved, and mad at the same time. For obvious reasons we were happy, Xander will be looked at by some of the best doctors in the nation. We were upset at Omaha, and the lack of urgency they had. I think that if I was a Doctor, or even a bigwig for a hospital, and I found out that it was easier to get into one of the best hospitals in the nation, before my hospital, I would change that. It's crazy that I could have 4 appointments (More if we needed them, and one that lasted a week) before I could even been seen in Omaha. Sorry about that, had to get it off my chest.

We kept our appointments, just in case, and scheduled with the Mayo. Two weeks later we were on our way up there. I have made the trip up to Rochester at least 10 times, I do not remember it taking so long. I also saw more windmills than I have ever seen, besides in Cali., there was fields of them there. When we arrived we were able to meet up with Travis and his family, his big family. We were greeted with 7 smiling faces, two hairy dogs, and 10,000 lakes. By the way, in Minnesota if you see a ditch full of water, you get to name it, and notify the authorities, that is why they have 10,000 lakes. I have named a lake every time we have visited.

The Eckersons were more than gracious, and treated us like family. We caught up with them until late into the night. The next morning we were up early, and off to the M.C. The place is HUGE, and intimidating, yet it felt right being there. We had such a peace being there and just kept saying "This is where we're suppose to be". If I were to give anyone any piece of advise it would be this, When someone you know or love has any medical issues do not settle. Research, and go to the best, because there is a reason they are the best. Now there are some who do not have the luxury of being able to do this, then I say fight for everything you can get.

The M.C. is a well oiled machine, simply amazing. It is like it's own NYC, people of all races, constant movement, and organized chaos. Admissions were a breeze, and getting around was not all that hard. Everyone and I mean everyone that worked there was extremely helpful. Our first item on our agenda was to meet with a Dr. Patterson who was incredible, let me explain why. We were warned by all we know that neurologist are not very people friendly. They say it's because they are terribly smart, and that causes them to be a bit odd. Dr. Patterson was so normal, compassionate, and loving toward our son, I actually started to get a lump in my throat as I watched him. It was in the small ways we had yet to see an a Doctor act toward our son, like compassionately saying to him "Your such a brave and strong boy aren't you" or "I'm so sorry you have to go through all this Xander, but we're here to help you, OK?" Being the detective first class that I am I noticed that Dr. Patterson was careful with his words when talking with us. I told him, "Say whatever you need to say, if your worried about our feelings I understand, but all we care about is getting our son fixed". I could see the difference in his body language and he seemed to speak more freely.

Dr. Patterson reassured us that he was going to do his very best, along with a whole panel of specialist, to help us find some answers, and start on a plan of attack. He thoroughly explained the test that were to be done the next day, and asked us if we had any questions. We asked a few and he answered them without making us feel stupid. I finally felt like a small part of a huge weight was off my shoulders, we had found a place for our boy, where they wanted to figure it out. Sarah and I looked at each other, and I could see the relief in her face. After we left she told me she loved Dr. Patterson, I figured it was because he was so incredibly nice, and helpful. I later found out it was because he was Australian, had that rugged outback look, and his accent was thick.

The rest of the day X had test that needed to be done, and everyone there was super nice. Now we have been to hospitals all over, Kansas, Cali, Boston, Missouri and Nebraska (Mostly for me because I like to get hurt on trips), and we have had good service and nice nurses, this was different. It was the way they did it, and if you are a parent then you will really understand this next sentence or two. You can usually tell when someone is being nice cause they have to and when they love their job and as a result, love your kid. Small things like gently talking to your kid, caressing his head, and actually listening to him. Even though this was their job, and had done this countless times it was seemed as if the spark had not left. We were totally taken back, even the guy who was in charge of nothing more than showing us where to go made sure he talked to Xander, and gave him some stickers when he was all done.

Xander had blood test done or pokey shots, as he calls them, and that was really sad. I remember being little and having shots, looking at my dad and pleading with him to "help" me. Xander did all of that, minus the help part, he just asked me "Daddy, please tell them to stop"(Always a polite boy). That was heart wrenching, being on the other side was worse because I knew that there was a part of him that did not understand and felt betrayed. The crazy kid refuses to look away during shots, and watches the entire time. After he was given his stickers he had had an EKG that needed to be done, that was no fun. He did not like that at all, but lucky for him his Momma was there, and he was able to get a nap in.

After all the test were complete it was time to go home, and get some rest. The Eckersons are awesome and went beyond the standards of friendship, offering us their home, food, children's rooms, and childcare. We had to keep Xander up most the night with no food for the EEG that was to be done.

The next morning came early and Xander had been replaced by Oscar, he was not happy. I can't blame him though, no food, and lack of sleep would tick me off too. The EEG went about as well as we could ask, he had a small seizure during the test which was a plus. He napped for most of it, and when it was all over, he remembered how hungry he was, and let everyone know. We had a plan in place for such an event as this. We had about 2 hours before our appointment with Dr. Patterson, and a place called Pannekoeken Restaurant. The Eckersons had told us about it and it was great. Xander ate to his hearts content, and when you order a pannekoeken, they jog from the kitchen to your table yelling "PAAAAAAAANNNNNNNNNNNNEEKOOOOOOOOOKAAAANNNNNNNNNN; X loved it, I did too. We try to go every time we are there. In case your interested, or at the Mayo here's the site

As the visit with the neurologist drew near, we all were a little nervous. When we arrived at the waiting room, we thought "Well this is where the love ends, we are going to be waiting for a while". NOPE, the wait was less than 20 minutes, despite a room full of about 20+ patients waiting to be seen, and a steady stream of people arriving. They have this thing whole "Helping people" thing down. If your wait is 20 minutes or longer they want you to let them know, and they do something about it. That is not normal, trust me, after all the different hospital stays/visits that we have had, it's not normal.

Dr. Patterson was still awesome, and explained the results of all the test, his EEG had shown an abnormality, despite everything else being normal. Including his MRI. After a brief discussion about this, I thought we would be done talking about his test, and results. I was surprised as I watched the Dr. turn off all the lights and begin to explain, in terms we could understand, the MRI results/pictures on his computer for the next 15 minutes. If he would use a medical term he would explain it so we could understand, and even showed X cool pictures of his brain. We all learned so much just being there.

We were told X had Simple Partial Seizures, and Complex Partial Seizures (This should give you info. on both types )
We were prepared for that, but honestly I was hoping they would say that he was OK, and his seizures would be gone real soon. I knew at the time it was wishful thinking, but I really wanted him to be the worry-free boy he once was. I was starting to miss those days; more now then ever. We talked extensively about different medications, side effects, and what we all thought would be the best. We chose to go with Tegretol, we would start out at the lowest dose possible and go from there. I was very pleased with the appointment, which lasted almost an hour, we were never rushed, or just another patient, I think that says a lot.

I really don't remember much about the ride home, I know we talked a lot about what was to come, and how we had to prepare for it. I think it was the fact that we had a wide variety of emotions that led to more of a quiet ride home. I know I did a lot of thinking, and a lot of not thinking (Guys understand this part, I have yet to meet a women that does).

The next post should take us all the way to the next Mayo trip. I know I am running behind, work and part-times are always getting in the way. Plus if I'm on this too much Sarah starts to tell me I need to marry it (The Computer). I looked into it and that type of marriage is not legally binding so I'll have to wait till California or Massachusetts allow it.

No comments:

Post a Comment