Things have been such a roller coaster ride since leaving the IMC almost two weeks ago. Larry has had a few good days, but has been in pain a lot and for the most part has just not felt well. I have had additional nursing responsibilities added to my already crazy schedule and I have gotten way out of my comfort zone in learning my new responsibilities.
After leaving the hospital, Larry was still struggling to keep his pain under control and regain his stamina. The majority of the pain was from the tube that they had to put in twice to allow his body to drain out his biliary fluids that had gotten backed up. He described the pain from this surgery feeling like he had been shot in his side with an arrow. Today we had to go back to the hospital and have a bigger tube put in and they made the drainage exclusively internal instead of being partly external. Unfortunately, this procedure irritated an already painful area and Larry has been in excruciating pain, even on heavy duty pain killers, since leaving the hospital. It is so hard to be a bystander and feel so helpless to know how to help somebody that you love.
We have been told that the pain should subside in a few days and the hope is that Larry will start to feel better once his body adapts to the tube and once he is able to drain internally instead of losing so many fluids externally. As he is now receiving 2,500 calories by Total Parenteral Nutrition (TPN), that is administered through a pic line going to his heart that bypasses the gastrointestinal tract, we are also hopeful that he will start gaining wait and stamina in preparation for his upcoming surgery that is scheduled for September. In order to allow his pancreas as much rest as possible he is not allowed to have anything to eat or drink by mouth until that time other than a sip of water everyday that he has to take to swallow his medications. These restrictions have been extremely difficult, especially because our house is full of seven other people who are constantly cooking and eating food. Larry has more self control and determination than anybody that I know.
In Larry's patriarchal blessing (a special blessing given to individual members of the Church of Jesus Christ of Latter Day Saints whose purpose is to partly give counsel and lifelong guidance) it says something to the effect that Larry has great things to accomplish on this earth and that Satan knows his capabilities and will do all in his power to prevent him from accomplishing his foreordinations. It goes on to say that he will have many, many trials on this earth and that he will be loved by all that he comes in contact with. He is told that, that love will carry him through the many trials. Through these experiences that we have had with pancreatitis, we have experienced many, many trials and the love and support we have felt from so many of our family, friends, and acquaintances have truly carried us through these many trials. I stand in awe as I witness these parts of his blessing being fulfilled.
One of the things that I have been so impressed with is how in touch the people we are surrounded by are with listening to and acting on inspirations they receive from the Holy Ghost. We have been the recipients of help with our children, delicious meals, help with our business, help with household responsibilities, and a host of other things and, usually just at the time that we need it. I could share so many specific examples, but I will just share a couple.
A few months ago when I was at an appointment out of town with Larry, I had a friend from our ward call and say that she had made some homemade bread and was on her way to our house to drop it off. After thanking her for her very kind gesture, I told her that we weren't home, but she would be welcome to leave it on the kitchen table. Right after I got off the phone with her, my seven year old son called crying hysterically because he was scared as he had accidentally ridden the bus home instead of going to the activity that he was supposed to go to. Miraculously, my friend showed up at my house a few minutes later and was able to comfort him and give him a ride to his activity. This was such a testimony to me that God is in the details of our lives.
After returning home from our most recent hospital stay, I was terrified to start learning and helping Larry with his pic line and biliary drain. Even though I had learned to do feeding tubes with some of my A-T children, this was way out of my comfort zone. A lady in my ward named Janis insisted on coming over and learning these skills with me. I wanted to tell her no, but she wouldn't take no for an answer and I didn't know at the time how badly I needed her support. She came to all four days of training that we had with our in-home nurses and assisted me with the first couple of times on my own. This was such a comfort to me. I have also been able to call her for back-up during times that I am not able to be here. I am so grateful to her for being there when I needed her.
Most recently, we have been the recipients of a lot of financial help and support. In a little over two weeks, and through the generosity of so many people, we have miraculously been able to raise close to $67,000 of the $85,000 that we need to go to the University of Minnesota in September for Larry's TP/IAT surgery where he will have his diseased pancreas removed and they will inject his islet cells into his liver with the hope that the liver will start producing insulin. In the last two days, I have also learned that they will be running the Oxford 5k in Larry's behalf and the annual 24th of July dinner in Weston will also be donated to Larry's surgery fund. The love and support that we feel from our community is overwhelming.
One of the most difficult aspects of living with pancreatitis is the constant disruption of plans and daily living. Larry very rarely cries, but he did on Sunday. He is the 1st counselor in our Bishopric and he finds great joy and fulfillment in serving in this capacity. He went to bed early on Saturday night and was very determined to at least make it to Bishopric meeting in the morning. He ended up having to take a pain killer at 4 a.m. and text the Bishop that he was not going to be able to be there. He just felt so discouraged at not being able to physically accomplish so many of the things that he had hoped to do throughout the week and missing Bishopric meeting was the breaking point. We ended up having a good discussion on focusing on the things that he could do rather than pointlessly being discouraged about the things that he couldn't.
For Larry's Father's Day gift, the children and I planned to organize his tool shed for him as he has been spending a lot more time at home. Unfortunately, due to many unforeseen happenings happenings of the week, especially in regards to Larry's health, we only got about half of it done. I just have to learn to be ok with it and keep plugging along at getting it finished as soon as I can.
We had also planned to go to TX as a family to visit Enoch's mission. Because of the accident that happened with Enoch's eye, our original trip had gotten cancelled. The new plan was for just Larry and Enoch to fly out to TX and spend a few days out there together, but when Larry got sick again and ended up in the hospital we had to make yet another new plan. The next plan was for me to go to TX with Enoch. When we learned about the procedure last Friday afternoon that Larry had to have done today I knew that I was not going to be able to go. As I was really looking forward to getting away for a few days and spending some time with Enoch, I was so disappointed to come to this conclusion, but I have had to learn to be flexible and patient through the pancreatitis that we have lived with for the past eight years.
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