Trip to ER

Today we spent from 8 am to about 8 pm in the emergency room at Portneuf hospital in Pocatello. At the end of the day Larry ended up being admitted to the hospital and I came home to with the children.

For about two months Larry's has gradually been having more and more pain in his digestive area, to the point where he has no desire to eat. At first we thought it was possibly tumors causing him pain, we also thought maybe he needed to change his diet, and most recently we thought maybe he had ulcers. We even went to to the ER a couple of weeks ago in Logan and they were not able to identify any foundational problems and just sent  him home with some medicine to coat his stomach. It was helpful occasionally, but did not address the foundational problem.

Last night when I got home from Bekah's dance competition Nate came and got me and ask me to check on Larry because he said that dad had been acting funny and was not well. I went and found him hunched over in pain, which happens often, but I guess he had been like that for most of the day and Nate knew that was not normal.😓 I ask Larry if he wanted me to take him to the ER, but he thought he could get through it by taking some pain meds. It gets really discouraging when you go to the ER time and time again and come home without any concrete answers.

This morning he got up to get ready for bishopric meeting. He is the 1st counselor in our ward and it was his turn to conduct the meeting today. He was especially determined to be there because the Bishop's brother had tragically passed away the day before and he really wanted to be there to support him. I could hear him getting ready to leave for his 6 am bishopric meeting and then leave the house. He came back in shortly after leaving asking if I knew where the key fob was for the car because when he went to start it, it wouldn't start and the light told him that the key was missing. He came in went through my purse with no luck and then ask me to go through my purse and I couldn't find it either. He went back out to the car and the key fob was sitting right where it was supposed to be and the car started right up.

He came into the house just beside himself, got very emotional and ask me to take him to the ER. He felt like the whole key fob situation was a sign from God that he wasn't supposed to go to his meeting and needed to go to the ER. As we were both feeling somewhat frustrated and discouraged we played uplifting gospel music on our way to the hospital to try and lift our spirits. It was also very windy on our drive and I had to drive about 20 mph under the speed limit so it took a little longer than normal to get there.

Thankfully, the staff were very welcoming when we got there and we were able to get right in. The first thing they did when we got there was get Larry hooked up to an iv and drew blood. They were also able to get his pain under control which was such a relief to both of us. The highlight of our day was being able to watch sacrament meeting shortly after we got there over zoom. Today was an exceptionally uplifting meeting and we gained much strength from listening to the testimonies that were born about Jesus Christ and his plan of happiness. 

He ended up having both a CT with dye and an MRI done. The blood work showed that his liver numbers were very elevated and his bilirubin numbers were starting to climb. Given the combination of the lab and scan findings they believe that he has blockage in his biliary stint that his causing him so much pain and trouble with digestion. He is scheduled for an ERCP tomorrow where they will go in with a scope and take a closer look at what is going on and hopefully be able to easily correct the problems. We are still hopeful and praying that he will still be able to start chemo on Tuesday. We are grateful to all of the wonderful nurses and doctors today who took such wonderful care of us and were extremely thorough in their evaluations.

Post IMC Hospital Stay

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.

We are FINALLY headed home!!!

After almost a week at IMC in Murray, UT Larry now has biliary drainage, a pic line inserted for his TPN feedings, his itching has mostly subsided, he has been given a round of antibiotics, insulin injections are in place, he has his pain under control, and we are headed home soon!!!

Tonight a nurse will meet us at our house and get us set up and started with his feedings and other procedures. I feel so much gratitude in my heart for all of the medical professionals involved in our care that have helped get us to this point. I also felt gratitude to my Heavenly Father for preserving Larry's life once again.

Larry will do his feedings through the night and ideally be able to function fairly normal throughout the day. We will have a repeat CT scan in six weeks and pray that the inflammation may be significantly reduced. The ultimate goal is to get to the University of MN for surgery asap. He is currently penciled in for September 3rd at which time he will have a TPIAT (total pancreatectomy with islet autotransplantation). During this 10-12 hour surgery they will completely remove his diseased pancreas, take out his islet cells that make insulin, and put those cells into his liver with the expectation that the liver will start making insulin in place of the pancreas.

Another Trip to the Hospital

We went to the ER in Logan on Sunday afternoon because Larry's skin color was yellow, he had been itching from head to toe for several days, and he was having severe abdominal pain. After all of the blood work, an ultrasound, and an MRI we learned that our situation was way more serious than we had thought. We learned that there was an almost complete bile obstruction that was causing the jaundice. This was the root cause of his severe itching. Normal bilirubin counts are 1+ and Larry was 8+. He was taken by ambulance to IMC in Murray, UT.

Yesterday they went in to do an ERCP to replace the pancreatic stent that was missing, but were unable to put one in because the inflammation was so severe. We also learned that the necrotizing (death of tissues) was more severe than we had realized and is now affecting both the pancreas and small intestine. He also has several infectious spots on the liver that are being treated antibiotics. In order to allow the bile to drain from his body he had a tube surgically inserted into the liver.

He is scheduled for a TPIAT (total pancreatectomy with islet auto transplantation) at the beginning of September at the University of Minnesota where they will remove his pancreas and then harvest his islet cells and inject them into the liver. During this procedure, the pancreas is removed and the islet cells are separated from the pancreas. Those cells will be returned to his body using an injection into the liver. There they will take root and continue to produce insulin, decreasing the chances for diabetes. This surgery takes approximately twelve hours. He will stay in the hospital for the first couple of weeks and then we will have to stay near the University of Minnesota for six more weeks for his post op care.

Due to the severe damage that has been done to his pancreas over the past eight years, he is in a higher risk category for surgical complications and the most important thing we can do at this point is to get his inflammation down as much as possible and pray that we can get to the surgery without any future pancreatic attacks.

We met with the Surgeon and Director of Medicine, Dr. Ott, this morning and our new plan is as follows:

• Have a pic line placed for total parenteral nutrition (TPN). This is a method of feeding that bypasses the gastrointestinal tract. Fluids are given into a vein to provide most of the nutrients the body needs. This method of feeding will allow the pancreas to completely rest and get the inflammation down.
• Start regularly checking blood sugar levels
• Keep the biliary line in place until the surgery in September.
• Run a coarse of antibiotics to keep the infectious spots at bay.

This last episode has been a roller coaster ride in so many ways and we are both just ready to have this eight year pancreatic nightmare come to an end. If all goes well he will be home by Thursday.

Even though it has been a very difficult couple of days, we have witnessed many miracles and tender mercies and we feel very grateful to Heavenly Father and his watchful eye over us.

Enoch's Eye Accident

Monday afternoon I was just finishing up my shift at the feed store when Enoch came in from working in the yard as he had a piece of metal hit him in the eye. Initially I just thought it was something that he would blink out, but because he could still feel it in his eye, and it started bleeding, we decided we had better get it checked out. We originally took him to Portneuf hospital where they did an eye exam and a then CT scan of his eye. They told us the results from the CT would be back in about a half an hour. We knew something was really wrong when they returned to the room in under five minutes and told us that we needed to get in our car and drive as fast as we could to Idaho Falls (about another 45 minutes) to see a retina specialist. They were very concerned as the piece of metal had cut through his eye and lodged itself in the back of his eye. After a quick examination with Dr. Thompson at Premiere Eye Care we were immediately sent over to EIRMC hospital for an emergency surgery. The doctor said it was a miracle that Enoch was not blind and also a miracle that he still had 20/30 vision when he got to his office! One hour later Enoch was whisked away for a two hour surgery where they stitched up the original cut and put three holes in the back part of his eye to be able to remove the metal piece and then they stitched up that area. The doctor said that the surgery went as well as could be expected and he felt very inspired through the surgery process. Monday night and most of Tuesday we spent in the hospital until his follow up appointment that afternoon. Enoch is in a lot of pain and has a very hard time getting comfortable because he cannot lay on his back until the bubble goes away in his eye (about four days). The doctor said we are not out of the woods yet with our biggest risk factors being infection and loss of eyesight. We will know a lot more when he returns to his follow-up appointment in a week. One of Enoch's first questions was whether or not he could still go jogging. The doctors reply was an emphatic, "NO!" His options for the next month will be riding the stationary bike and resting. Enoch's missionary homecoming report is scheduled for this Sunday. When we ask the doctor if it would still be o.k. to move forward with that he said that he would be fine to do that. So for anyone who is wondering Enoch is still scheduled to speak on Sunday morning at 9. Of course the trip could not be complete without me getting pulled over for going 75 in a 65 on the way home. Luckily, the police officer took pity on us when he took a look at Enoch's eye, told me we had enough to worry about, and just gave me a warning. We are so incredibly grateful for God's watchful eye over our family once again and we feel so blessed to have had such amazing doctors that were able to help us so quickly and skillfully.

Endoscopy

 Larry went in for an endoscopy last Wednesday. They have never done one before because there is a high risk of it irritating the pancreas and causing another pancreatic attack. Because the pancreas is necrotizing (dying) the surgeon placed a stint in the badly misshapen pancreatic duct in hopes of helping the pancreas to drain and facilitate the body's ability to heal. He thought that he might be able to perform the endoscopy without removing the feeding tube, but he ended up having to remove the tube and did not replace it. 

He suggested that Larry wait 24 hrs and then start drinking water, followed by juice, pudding etc. I personally did not think this was a good idea, but the Dr thought the stint might help him be able to digest food. His findings from the endoscopy were that Larry's pancreas was like cottage cheese, the pancreatic duct was extremely deformed, and he was concerned about what he looked like we're a couple of tumors or growths. He did not biopsy them for fear of spreading cancer if they were cancerous. 

The eating thing did not go well and by Fri afternoon Larry had gone back into a full blown attack (I knew he was in trouble when he went for a pain patch because he only uses them as a very last resort). We knew he needed fluids, pain control, and some kind of feeding tube put back in. We decided to get out of the IHC loop and come down to the U of U to get a second opinion. We have been here since last night and Larry will be here for at least a few days. 

There will be a team of GI specialists meeting with him in the next day or two to hopefully get to the root of all of this and help us out together a sustainable plan. After doing another scan they do not seem to think there were tumors (super good, bit extremely confusing news). There were, however, some answers on the liver that they wanted to look at and there was another blood clot which seems to be par for the pancreatitis course. The night before Larry went into the surgery he was given a beautiful blessing of healing and that the Drs would be led and guided. Those are the blessings and promises that we are holding onto. We feel all of your love and concern and appreciate it more.than you will ever know.♥️

FYI We got to the ER about 7 pm last night, but he was not admitted to the hospital until 4 am. After a very long night in a pretty trashy emergency room and a dinky exam room with just a chair for me to sit in I was looking forward to sleeping on the couch in the room that the nurse had told me about. Unfortunately, she was misinformed and I was not allowed to stay the night. I was so tired I just ended up sleeping in the parking garage in the Prius. I just ran the car for 4 Hrs so I would have heat (luckily it doesn't take any gas running like that) and I just turned on conference and tried to sleep.🙄 I got special permission to stay tonight because of the weather, but I will be going home in the morning and will probably come back Monday morning.

Spencer keeps having pancreatitis symptoms (pain in the stomach radiating to the back, not eating or drinking, problems breathing and just feeling plain miserable) and I finally convinced him to go the the ER last night. Frustratingly, all of his blood work came back normal including his enzyme levels, which were actually on the low side. His blood work did, however, indicate that he was dehydrated so they gave him some fluids. Sadly, this ER visit only added to the narrative that the medical community will never be able to help him and he made the comment that this is exactly why he avoids going to the doctor.

The doctor was strongly suspecting kidney stones, but when there was no blood in his urine she opted not to. As I have started putting all of the puzzle pieces together and watch Larry & Spencer suffer in very similar ways, I highly suspect that he has had chronic pancreatitis for at least a few years. My suspicion would be that it started the second year of his mission when he got really sick and started having a variety of health problems, including losing weight, stomach pains, and lack of energy.

After posing my suspicion about Spencer possibly still having pancreatitis even though his enzyme levels were not elevated to the pancreatic group I learned a lot. I learned that many fellow pancreatic sufferers had had experience with having pancreatitis without the enzyme levels being elevated. It's possible that if they would have went ahead and did the CT scan that they may have been able to identify some inflammation, but the endoscopy with ultrasound is the most reliable. I learned that there can be scarring and calcification going on without the intense pain. It was also suggested that I look up MALS. Median arcuate ligament syndrome (MALS) is a rare entity characterized by extrinsic compression of the celiac artery and symptoms of postprandial epigastric pain, nausea, vomiting, and weight loss mimicking mesenteric ischemia.

Signs and symptoms of MALS include:

• Pain in the upper middle stomach area, which may go away when leaning forward.
• Stomach pain after eating, exercising or shifting body position.
• Fear of eating food due to pain, leading to significant weight loss — usually greater than 20 pounds (9.1 kilograms)
• Bloating.

I am anxiously waiting to get Larry's genetic testing back (about 4 weeks) so that we can hopefully have some more answers.

Queen of Feeding Tubes

 I am going through so many mixed emotions right now. Larry has been admitted to the hospital and will be having a temporary feeding tube placed tomorrow. One of my friends told me that I am the "Queen of Feeding Tubes". Truly not a title I aspired to when I started this journey over 23 years ago. The foundational problems started back in 2013 when he started having pancreatic attacks. After enduring about six years of these attacks, we had about a year and a half break. About three months ago, Larry started having major digestive issues again and it has gotten to the point where he refuses to eat because it hurts too bad. He has lost 40 pounds in a short amount of time because of it (the picture on the left was about three months ago before all of this started and the one on the right is more recent where is coat is baggy and his face has really thinned out, the disturbing part to me is that I feel bones where muscle used to be). We went to a doctor a couple of months ago seeking answers, but found nothing. We went to the ER about a month ago and had more imaging and tests done and once again found nothing. After spending a lot of time in pain last night, and throwing up what little he did get down last night (the second time this week), I finally convinced him to let me take him to the ER. I prayed so hard that we would have good doctors and that we would find answers. The doctors were somewhat hesitant to repeat the same testing that the had done just a month ago, but chose to do it anyway. This time they found the images of his gut area to be a "train wreck" as they described it. Initially they were going to send him immediately to LDS hospital in SLC, but after further discussion, they decided to keep him in Logan (closer to home!) and have a feeding tube placed that will bypass his digestion for the next six weeks so that his digestive track can get some rest and have time to calm down. The hope is that they will get the tube placed and be able to send him home in a few days. He will then go to LDS hospital where they will do further studies to start sorting out issues that need addressed. I am not super thrilled about the findings, but I am super grateful that we are finding answers and that my prayers are being answered. I am also so incredibly grateful that Larry is FINALLY out of pain and resting peacefully beside me (with his noise cancelling headphones on of coarse, because there is no other way to get any sleep in the hospital) and he has fluid going into his body. Thank you everyone for reaching out to us and for your love and concern. We really appreciate it.

UPDATE: Larry was feeling better this morning, his color came back, and he was bouncing off the walls with energy as was evidenced by his doing laps around the halls while dragging an IV pole with him. I think it just felt good to be pain free and have adequate fluids in his body. Having the feeding tube placed around noon was very traumatic on his body and it is extremely uncomfortable and will take some serious adjustment. He does, however, seem be be tolerating the feeds ok which is great news. He is so ready to go home, but will likely be here through at least Wednesday. He told the nurse to just give him his bottle and let him go back to workI am just so grateful that we even have these options available, even if they are not ideal, and for a husband that keeps fighting so that he can be here to take care of his family!

LAST UPDATE: We are leaving the hospital soon! Larry looks and feels so much better than when we came in on Sunday. So grateful for the help we have received on so many levels. Not sure exactly what we are dealing with yet, but just feeling grateful that Larry has gotten the nutritional help he needs while we get this figured out.

154Tina Ward, Bekah Ward and 152 others

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