This is going to be a very difficult post to write. All I did was type the title and then burst into tears. I don't remember crying very much when I was in Arizona. I guess now I realize that this was pretty much the beginning of the end. And it sucks.
You can read Joe's medical history part 3
here
We left Utah on April 1, 2008 to go to the Mayo Hospital & Clinic in Arizona. Jonas was so sick at this time. I could see all the bones in his back.....it was so sad and so awful. He had lost most of his muscle and could barely walk. His face was pale, his cheeks were hollow, and his eyes were sunk in. Seeing my husband like this was heartbreaking but also so scary. He was my protector, our family provider, my sweetheart, my best friend.....I felt helpless and so very very alone. This is the last picture I have of Jonas before we went to the Mayo Clinic. This was taken March 16th and we left April 1st. He weighed around 120 lbs in this picture. When we arrived at the Mayo Clinic he weighed 108 pounds!
For some reason I can't remember what it was like at the airport in Salt Lake but I do remember the plane ride. I felt like I was in a constant state of heightened alert. Every bump the plane made I worried it was hurting Jonas. I couldn't stop watching him. I was worried he would have a diabetic seizure or pass out from pure exhaustion. When we arrived in Arizona we had to walk up a ramp. I do not know how Jonas made it. I am pretty sure he was being carried by angels. We walked off the ramp into the airport....he was breathing so heavy....his body was shaking. He needed to sit down, so I told him I would find a wheelchair. I found someone to bring him a wheelchair, we got our bags, and went to the shuttle pickup. I remember when the guy brought the wheelchair to Jonas that it was so hard for him to stand up and move to the wheelchair. I have a vivid memory of Jonas collapsing into the wheelchair. He had no strength left.
We arrived at the hotel and every move Jonas had to make was a huge effort for him. He made it off the shuttle, I checked us in, and he immediately went to bed. I was so stressed about what I was going to get Jonas for dinner. Everything he ate went straight through his body. Nothing sounded good to him. I think I forgot to mention that before his hospital stay at the University of Utah in March we had gone to see a doctor at Salt Lake Regional hospital. He had done an endoscopy on Jonas and thought he had celiac disease. It had not been confirmed yet, but also not ruled out, so Jonas was trying to avoid gluten at this point. He was also avoiding dairy because it seemed to make him worse. So no gluten and no dairy....seriously.....this rules out a great deal of food. I felt so helpless. I felt so incompetent. I did not know how to care for my husband and it was a horrible feeling.
We had to be at the Mayo Clinic at 8:30 AM the next day. I don't know what I was expecting when we got there but definitely not that. I guess I thought we would be checked in and he would be staying in a hospital. Wrong. We met with an internal medicine doctor that looked over Joe's medical records, I told her his story, and she did an exam on him. She then told us to go down to the lab to get blood drawn and then to come back to another area to get our schedule. She would be working on making appointments for us for various doctors over the next week. All the doctors were located in the Mayo Clinic building but we would not be checked into a hospital. We would have to travel back and forth each day from our hotel to the clinic on a shuttle. I was so upset. I knew Jonas was not going to be able to do this. He was too sick, too weak, too stressed, too frail. I felt like the weight of the world was just thrown at me. How were we going to do this?
It took a long time to get blood drawn because Joe's veins were so bad. They had to first give him fluid because he was severely dehydrated. After many times of trying they finally got a vein and took 18 vials of blood for various tests. We went and picked up our appointment schedule and were both very upset when we found out they were having a hard time getting an appointment with the immunologist. (Remember that in Utah they had told us that the immunologist was the doctor that needed to figure out what was wrong with Jonas and he couldn't be seen until May.) Hearing the news that the immunologist was hard to get into at the Mayo too was almost more than Jonas could take.
I had to push Jonas in a wheelchair to his appointments. I remember how hard that was. I had to carry our laptop, my heavy bag, Joe's diabetic bag, and push a wheelchair. It was tough! I have vivid memories of pushing Jonas in his wheelchair. The hallways were so long. I remember that we got off the elevator on the wrong floor a few times and couldn't find some doctors offices. We had to wait for an hour sometimes to see a doctor. Jonas was as ornery as a bulldog! (Not really sure if bulldogs are ornery, but I thought it sounded good.) I remember we had about a two hour wait for one of our appointments and I took Jonas to a waiting room that had recliners for the patients. I got him settled in a chair and covered with a blanket. The room was dark so that the patients could sleep so I went to the waiting room next door and tried to concentrate on checking my emails. But, I was always so worried about Jonas and if he needed me or if he was ok. Being at the Mayo Clinic was really really stressful!
Traveling back to the hotel that night was really hard on Joe. Every bump the shuttle hit, every turn it took seemed to cause pain for Jonas. He had to sit with his eyes closed and concentrate on not throwing up or passing out. We got back and he just wanted to sleep. I went and got him some soup which he never touched. He threw up a few times that night. I didn't know how we would get through another day.
The next morning we had to get on the shuttle again. It was another awful experience. When we arrived at the clinic Jonas got back in his wheelchair and we began the process of finding doctors offices and waiting for our appointments. I think Jonas had a cat scan that morning and then doctor appointments in the afternoon, but I don't remember which doctors we saw. I think it was later in the afternoon when I decided to call the internal medicine doctor that checked us in and was coordinating all of his appointments. I told her nurse that I was real worried about Jonas and to check his blood work to see what his potassium levels were at. They said they would call me back.
She called me back about an hour later saying that his potassium level was 2.6 and to go to the Mayo Hospital ER. Normal was about 3.5 to 5.0. If your potassium gets too low it can cause severe effects on the heart, nerves, and muscles. We had to take a shuttle to the hospital. I don't remember much about the ride over there and I don't remember if we had to wait very long to be seen at the ER. I do remember that after some blood work was done they found that his calcium and magnesium levels were also low. They gave him some IV supplements and were monitoring his heart closely because his heartbeat was very irregular. At 3:00 AM, after another blood draw, his potassium had dropped to 2.2 which was the lowest it had ever been. They gave him IV potassium supplements and then admitted him to the hospital.
I. was. so. relieved.
I felt some of the weight being lifted off my shoulders. I could breath a little easier. He would now be under the constant watch of nurses and doctors. They could figure out how to nourish him. They could get him to the bathroom when he was too weak to do it on his own. They could worry about the fact that he looked horrible and that he may die at any moment. I could now just focus on being strong and positive for Jonas. I would continue to be the unemotional mess I really was. I would not let Jonas see me cry. I was calm and collected on the outside. I pushed down my fears and never found my tears. I am so sorry Joe. I am so sorry I couldn't take care of you.
