The Real World, TPN 101, & Guitar Lessons

The highlight of our week was attending the Logan, UT temple last Friday to do proxy sealings with a group of friends. Due to all of the covid restrictions, it has been a very long time since we have had this opportunity. The Spirit there was so strong and the feeling of peace was incredible. As we got onto the the elevator, after our session, and were heading downstairs, I made the comment that it was going to be hard to go back to the "real world". One of my friends commented that being at the temple was the "real world". What an awesome reminder of how this earth life is just a test and in the end, if we stay on the covenant path, this will be our permanent reality.

In regards to Larry's health, he has been able to maintain his weight of 143 lbs. for the past couple of weeks, which is great news after the initial 8 pound loss he had after starting the TPN a little over a month ago. He is now the same size as Spencer and luckily Spencer has extra clothes that he has been able to borrow, including an extra suit for church. They adjusted his formula for the third time this week which has significantly reduced the insulin he is having to take, as the amount in the sugars has been significantly reduced and his protein has increased. Unfortunately, his energy and stamina have yet to return.

Last night Larry had a rough night's sleep as he was up a lot in level 7 pain in his middle to lower back (typical spot for pancreatic pain). He also had an episode yesterday that felt like a pancreatic attack. He will be having blood work drawn tomorrow and a CT scan on Tuesday to get a better picture of what is going on. A couple of thoughts we have had is that possibly his biliary drain, that he had placed at his last hospital stay, is giving him trouble or Larry had the thought that possibly the smoke in the air is causing his pancreas to act up. Through the years there have been so many factors from environment, to foods, to stress, that have caused these flare-ups, smoke being one of them. 

As Larry is currently not able to eat or drink anything by mouth, except for a small sip of water with his morning pills, finding solutions to help get the inflammation in his pancreas down can be tricky. After asking for possible solutions on a face book group that I am a part of, I received the following ideas: coffee enema, DDR prime essential oil (the main ingredient in this is Frankincense which I have been using), laser treatment (thanks to Larry's brother we just happen to have one and have started using it), Renu 28 (have this and have started using it), gi gong doctor (specialize in helping to heal the body by moving the qi-life force). I love gathering other people's ideas because through the years some of the most helpful ideas, in regards to our health struggles, have come from people that I am surrounded by.

The whole TPN lifestyle can get very wearing and old for all of us, but it is our hope that allowing the pancreas to completely rest will give us the desired result of significantly reduced pancreatic inflammation, so we continue on with this process. I especially feel sorry for Larry who has missed out on so many delicious meals because of his restrictions. I am so impressed with his self control and cheery attitude through it all. In the beginning I was terrified and extremely reluctant to learn the TPN process, as this feeding goes through a pic line that runs through his heart. There is so much to remember and so much that can go wrong. I am happy to report, however, that I could now almost do it in my sleep and we have remained infection free thus far (keeping my fingers crossed)! 

As some of you reading this blog may be experiencing the same thing, I want to assure you that if I can do it anybody can do it, and it is not as scary as it initially seems. It has really helped me to get my younger kids involved in the process. The steps that we go through everyday to make it all happen are:

1. Get TPN bag out of fridge at least an hour before we start his feeding (you don't want a cold liquid running through his heart).

2. Insert the vitamins and insulin into the bag using a syringe, making sure that there are no air bubbles in your syringe. Nate and Rachel love disposing of the needles into what Nate has named "the red gas can". I then shake the bag for 30+ seconds to distribute the vitamins and insulin throughout the formula.

3. "Spike" the bag and insert the tube for the feeding into the bag. We have to hold the bag up and prime the tube making sure that we get all of the air bubbles out. While we are doing this, Nate has learned to change the batteries in the pump that have to be changed on a daily basis. We also go through several alcohol wipes making sure that anything that is touched or exposed remains completely sterile.

4. Strap the bag of formula into Larry's backpack. We have termed this process "strapping the baby into it's car seat"and then thread the tubing into his machine and set it by Larry's recliner so that he can start the machine when he is ready. 

These feedings take 14 hours a day. Ideally he starts the feedings at 6:00 pm and is finished by 8:00 am, but it doesn't always go as planned. As long as Larry is not on pain meds, he can set things up for himself, but we try to support him as much as we are able because it is a very monotonous process and I know that it really helps him to keep going to have the support.

Last Christmas Enoch bought Larry a guitar so that he could learn to play. Now that he has significantly had to reduce his time at work, he has had more time for things like this. It was so fun tonight to watch Enoch giving his Dad guitar lessons. This has been a fun skill to help pass the time as he has been so restricted in his ability to do everything that he is used to doing. Can't wait until he is serenading me with romantic love songs!