This is a continuation of Joe's medical history which you can read
here.
When we arrived home from the airport on April 17th, 2008, Jonas was in for a shocking surprise. This was the condition of our backyard when we left on April 1st. Our backyard fiasco started clear back in August of 2006. Our next door neighbors were going to build a block wall fence, so Jonas thought it would be "really cool" if we did too. (Because he had lots of spare time to spend building a fence in between school, work, and not feeling good). To make a very long story short, we ended up hiring someone in September 2007 to finish what we
(he) had started. Jonas was no longer feeling well enough to try and finish this major project. But, the guy we hired was a "hit and run" type of fella. He came, he started the job, he took a little more than half the money we had agreed to pay him, and then he disappeared. Stressful? Totally. We kept hoping he would come back, but we never saw him again.
The partially worked on wall behind Sam and Ben is all our so called "fence builder" had done
This is what Jonas saw when we pulled up into our driveway:
My dear friend had put herself in charge of a major project. I didn't even know this was going on and when I got back on April 12th I was shocked when I saw our fence almost finished. My friend had been talking with my mom while I was gone and had arranged an entire neighborhood and community of "secret helpers" to finish our backyard. Jonas was speechless when he saw it. He was in tears and couldn't believe what he was looking at. What is even more amazing is the "secret helpers" didn't stop with just a fence. Neighbors and friends brought in dirt to level our yard, they put in a sprinkling system, they put in our grass, they put together a small storage shed and a swing set for my kids. The kindness and hours of service that were spent on our behalf was so incredibly generous of so many people. Everyday something new was happening in our yard. It looked beautiful! We were so grateful and just amazed at how many people were willing to help with our yard. It was a very humbling experience. It was hard to watch so many people doing things in our yard....we felt guilty..... Jonas especially felt like he should be out there helping. He desperately wanted to be out there with everyone, but he was still really sick. He was so grateful though, and I know he wished he could have personally thanked everyone who had helped with such a huge project. Thank you so much my dear friends and neighbors. We are so thankful for you and you will never know how much you touched our hearts.
These are pictures of some of the people helping to haul all the dirt to our backyard. I wish I would have taken pictures of how many people showed up to lay our sod. There were at least 20 people there helping!
I don't have "after" pictures, so here is one I found of our yard in June. We were so excited to have a yard for Sam's birthday party!
I need to backtrack and fill you in on how Joe's recovery from the Mayo Clinic was going. When we got home he was still so sick and frail. We had a nurse from Coram Healthcare come to our house a few hours after he got home to show me how to do his IV antibiotics and TPN. I remember feeling very overwhelmed and nervous to be in charge of his medications. I had never done anything like this and it was totally freaking me out. Thankfully a nurse would be coming to our house to change the dressing on his PICC line and access his PORT once a week. I was not ready to take that on. I eventually did it a few months later (because our insurance would no longer cover a nurse coming to our home if Jonas was working) so I was forced to learn how to do it. Putting needles into Jonas the first time was SO scary! After several times I felt more comfortable with it and I actually got really good at it. :)
This is a picture from Feb. 2010, but I wanted you to see what his port looks like. This is after a surgery he had to move his port from one side to the other. The doctors had to remove it because the skin had become so thin that he had holes that wouldn't heal. The needles that are covered with a dressing and the tubing hanging down....yeah.....I put those in. :) I did that every Sunday night for about two years.
From the time Joe got home from the Mayo until mid May I pretty much had to do everything for him. He was so weak and tired. He slowly started to gain weight though and even though he still had severe diarrhea, which was making him dehydrated, we finally got the fluid in his TPN high enough so that it would offset everything he was loosing each day. Getting the TPN to be "just right" was frustrating and a slow process. After several weeks of seeing an Internal Medicine doctor we didn't care for, we finally got into Dr. Penrod at the University Hospital. He was awesome. Taking care of a patient who is on TPN takes a lot of time. Seriously.....not many doctors want TPN patients! They have to check labs weekly and meet with dietitians and pharmacists to get the TPN exactly right. It's a lot of extra work and I am so grateful Dr. Penrod was willing to do that for us. He helped Jonas out so much.
We had so many doctor appointments in the months of May, June, July, and August. It seemed like we had at least one a week and sometimes two. Jonas was seeing FIVE different specialists! He was seeing an Endocrinologist for his diabetes, a Gastroenterologist for his diarrhea, a Hematologist for his low white blood count, a Pulmonologist for his lung infection, and a Immunologist for his Immune deficiency. He was also seeing his Internal Medicine doctor and a dietitian. That's a total of SEVEN doctors that wanted to see him monthly until the end of the summer. Then it went to every two or three months that we saw each doctor. Our schedules were crazy!
I wish I could remember how many ER visits we had after we got home from the Mayo. I think maybe 3 or 4 and they were because of low potassium or dehydration and I can't remember what else.....but it all had to do with the TPN getting balanced with what Joe's body was doing. This is when a journal would be nice. I can't recall so many details about this time and its making me mad! If only I had written in a journal....
Here are some pictures of Jonas in April and May. I still get shocked when I look at them and see how skinny he was. He had literally been starving to death and it makes me so sad to think about that.
In June another amazing service was done for us. Some friends put together a benefit dinner to help us pay for medical bills. The turn out was unreal. It was held at West Bountiful park and it seemed like the entire city was there. The food was catered by Red Flame and there was also a bake sale. It was shocking and humbling to see so many people come to support us. I wish there was a way to thank each person individually who supported us through this time. But how does one go about thanking an entire city and community?! Seriously. I live in an amazing area. We were so touched by the generosity of so many people and I truly want to thank you and tell you how much that meant to us. I wish I had more pictures of the benefit dinner, but here are a few I could find. Look at the line of people waiting for food.....look at the parking lot full of cars. It was amazing. It was touching. It is something I will never forget.
At the end of May, Jonas went back to work. He was feeling better and gaining weight almost weekly. The IvIg he was receiving for his immune deficiency was helping, the TPN was helping his malabsorbtion, the neupogen shots were helping his chronic low white blood count, and the IV antibiotics were helping his lung infection. He was getting better! We were so excited and happy to have a healthy dad and husband again. We tried to put out of our minds that the diarrhea problem was still not solved, but at least it was being treated.....not fixed or cured, but treated.....and that was good enough for now.
June
July
July
August
September
November
Things were going great! It just never seems to last very long when it come to Joe's health. This is a picture of Jack's blessing day. On this very day Joe's PICC line was really itching and irritating him. He put some cream on it....nothing too unusual.....BUT if you happen to have a low white blood count and a PICC line that can get infected easily.....DO NOT use cream that the dog has chewed on! Our dog was always chewing on tubes of cream, neosporin, A&D ointment. He loves them. Well, Joe grabbed a tube that Gus had chewed on (I can guess why we still had the tube of chewed cream instead of it being in the garbage. Joe was tired of spending money on new tubes of creams and ointments!) He put some under the PICC line dressing to relieve the itching. Doing that caused him to get an infection. He got really sick and ended up in the Huntsman Hospital. They admitted him to the Huntsman Hospital this time because his white blood count was almost zero. He was admitted on Thanksgiving Day. It was our year to go to the Webster's for Thanksgiving, so he told me to take the kids to dinner and he was going to drive himself to the ER. I didn't want him to take himself, but he really wanted me to take the kids to his Grandma's for Thanksgiving. He had decided to go in because of a fever he had that hadn't gone away for a few days. His doctors had told him that if he ever got a fever over 101 that he needs to come into the hospital. He missed Thanksgiving and ended up in the hospital for 16 days!!
It was a very depressing time for Jonas because he felt ok other than a fever that would not come down. He was so bored and felt like he was going crazy being stuck in the hospital for so long. The first 7 days he needed to be there to get his bacterial infection treated and he also had a fungus in his throat that needed to be treated. But after that it really became a waste of time. After 14 days they finally figured out his fevers wouldn't come down because of all the antibiotics he was on! They took him off two of the antibiotics and his fever finally went away. After 16 LONG days he got to come home. I think this is when they removed his PICC line so he would only have to worry about his PORT. At least he had been in the Huntsman for 16 days and not the University Hospital. Being in the Huntsman Hospital was like staying in the Grand America. It was fancy shmancy. The room was huge, the food was excellent and he could call any time of day to order things, and the TV and movie selection was fabulous. So I guess if anything positive came from this at least he was well fed and entertained!
Jonas was home for Christmas, which I had started to wonder about when he was at the hospital for so long. He felt ok in the morning, but as the day went on he started to feel sick.....again. This is the smile he put on for everyone that day....
......but this is how he really felt. Not that great.
My poor honey! He started to feel really sick by the evening so he didn't come with us to his Grandma's and Grandpa's to visit with his extended family. So now he had missed Thanksgiving with his family and Christmas with his extended family. Such rotten luck. Jonas stayed at his mom's house and slept while we all went to his Grandparent's house. This also happened to be the year of the horrible snow storm that came in on Christmas night. When I left Joe's grandparent's house it was starting to snow. When I got to Joe's parents house in Taylorsville, it was snowing even harder. Joe was too sick to drive home, so I had to do it. Driving at night scares me, so you can imagine how petrified I was driving home in a storm. My hands gripped the steering wheel for dear life the entire way home. I have driven in snow storms plenty of times, but I have never been in a storm that bad. There were some spots where it was a white out and I couldn't see anything. To make matters worse, Jack, who was three months old was screaming in his car seat. It was a horribly scary experience! When we finally pulled into our driveway a hour later, (Taylorsville to West Bountiful is usually a 20 minute drive) I started crying because of how scared I had been and my hands were numb from gripping the steering wheel so tight. I was so thankful we had made it home safe.
Jonas was better by New Years Eve and the year 2009 was actually a really good year for Jonas' health. I will post on that year next time.
