This was April 8, 2007. I love this picture of Jonas. (I have a totally HOT husband!) He looks so happy and so healthy. He probably weighed about 150 lbs. The beginning of the year started out pretty good. He would come home from work feeling tired, but nothing too alarming.
We loved our yearly trip to Lagoon. We started going when Sam was 18 months and went every year. I have so many fun memories of us being at Lagoon together. It was really hard to go this year without Joe. We were all missing him. When we walked by the Dinosaur Egg Drop Sam said, "I wish daddy were here to ride with me." Sam and Jonas went on that ride many times together. They also loved the haunted houses and Jonas took Sam on that last year at least 10 times if not more! By October 2007, Jonas was not feeling good on a regular basis. He had started to loose some weight and the diarrhea was getting worse.
My birthday request was to have a family picture of us. I remember that Jonas was not feeling good but agreed to do the picture. I am so glad he did. Can you tell he had lost more weight by this time? From the pictures I took on Christmas day he seemed to be doing ok, but I think he was really good at hiding how terrible he was feeling. He probably weighed about 135 lbs.
This picture was taken in Disneyland on Jan. 9th, 2008. I am always amazed at how Jonas got through this trip. There wasn't one day where he felt good and he managed to do all that walking. He is truly amazing. (What's really amazing or more like a miracle is that I got pregnant with Jack in January. Still not really sure where he found the energy for that......but I KNOW that we needed Jack in our family and that I would especially need him now to keep me moving each day.)
Starting about mid January Jonas was not feeling good on a daily basis. He somehow managed to keep going to work. He would come home and go immediately to the couch to rest. He would try and eat a little something, but was usually too tired and would go to bed. He was loosing weight faster now, and I was starting to get really worried. He was always so cold. I remember the heat was always turned up really high and he always had the electric blanket over him. He would still try to get some play time in with the boys, but it was always while he was sitting on the couch. I remember feeling so alone and stressed. I don't think at this point anyone knew how sick Jonas really was. He barely made it through work each day and then spent the whole evening on the couch. It was a really hard time for both of us.
If you enlarge this picture you will see how skinny Jonas is. He ended up going to the hospital on March 7th and got home the day before Ben's birthday on March 13th. I don't remember how we ended up at the hospital. I have so many boggled memories of different ER and hospital stays that I have a hard time sorting them out. I wish I would have kept a journal about each visit. I think we finally decided to go to the ER because of how lethargic he felt and how severe his diarrhea was. They admitted him because his potassium was extremely low. (I believe it was 2.6 and normal is about 3.5 to 5.0). The cause of his low potassium was his severe diarrhea. During his hospital stay they ran many tests trying to figure out why everything was just flushing out of his body. His electrolytes were also out of whack. They managed to raise his potassium through IV infusion and they got his electrolytes balanced out. He was severely dehydrated and it took many bags of fluid to get him back to normal. I think this was the hospital stay that they diagnosed him with pancreatic insufficiency. Joe's body was not breaking down fat. He would have to start taking enzymes every time he ate in order for the fat to be broken down. Here is a medical explanation of pancreatic insufficiency:
Pancreatic insufficiency: Not enough of the digestive enzymes normally secreted by the pancreas into the intestine. Pancreatic insufficiency is a hallmark of
cystic fibrosis.
The pancreas is a spongy, tube-shaped organ about 6 inches long. It is located in the back of the abdomen, behind the stomach. The head of the pancreas is on the right side of the abdomen. It is connected to the duodenum, the upper end of the small intestine. The narrow end of the pancreas, called the tail, extends to the left side of the body.
The pancreas makes pancreatic juices and hormones, including
insulin. Pancreatic juices, also called enzymes, help digest food in the small intestine.
Insulin controls the amount of sugar in the blood. Both enzymes and hormones are needed to keep the body working right.
As pancreatic juices are made, they flow into the main pancreatic duct. This duct joins the common bile duct, which connects the pancreas to the liver and the gallbladder. The common bile duct, which carries bile (a fluid that helps digest fat), connects to the small intestine near the stomach.
After six days they sent him home with a prescription for oral potassium pills and enzymes. He still felt like crap. I wondered how they thought the potassium level would stay up with oral pills? I also wondered why in the heck they were sending him home when he was still so sick. The day he left the hospital he weighed about 120 lbs. But they told us the doctor that needed to figure out what was wrong with him was an Immunologist. So an appointment was set. For about May 8th. That was the soonest he could be seen. After getting Jonas home and seeing how sick he still was I was pretty sure he wouldn't be alive by May. He was wasting away. He was becoming skin and bones. He was unable to work and spent every day getting worse. He was loosing hope and so was I.
By the last week of March Joe's mom and dad really wanted him to go to the Mayo Clinic in Arizona. They were trying to find some hope for all of us and thought we could find it there. On March 30th, we finally convinced Jonas to go and we boarded a plane to Arizona on April 1, 2008.
I had a day and a half to get ready. I didn't have time to think about how much I would miss Sam and Ben. I am so lucky to have an amazing mom and sisters who whisked in and took care of everything. They cleaned my house and took care of my children. What a blessing they were to me and still are. I also have wonderful friends and neighbors that filled my freezer with food and helped on another major project which I will talk about in the next post. The time we were at Mayo Clinic and Hospital was pretty much a nightmare. It will have to be its own post which I will hopefully get done soon.
Part 1 of Joe's Medical history can be found
here
Part 2 of Joe's Medical history can be found
here
