Feeding Tube part 2

Feeding Tube Placement Part 2

ALS with Anna Vol 4.

So we left off with me waking up in recovery with Jason by my side. Now I realize part one came off as Mayo is awful, but don’t get it twisted they are THE BEST and ONLY place I will have any surgical procedure at. I always say you need to live by the 5 P’s: Prior Prevention Prevents Poor Performance. If we had called beforehand and done our due diligence the hospital and I may have been better prepared. Honestly, I think I was ignoring the elephant in the room (My procedure) like if I don’t Acknowledge it I don’t have to process it. I knew I had to have a tube so there was no point in stressing so I ignored it.

So from the time they finally gave me that delicious cocktail until much later that night everything is a blur. Because of my ALS, my body spasm constantly. It happens from my feet all the way to my neck. Most of the time you can’t see it, unless it turns into a cramp. After the procedure my stomach was spasming a lot. This caused a lot of my pain. Most of my doctors were scared to

give me pain medication because of my ALS and complications it might cause with my breathing. So the first night was hell. I was in pain, couldn’t sleep, and my leg muscles had become stiff and we couldn’t get my legs to bend. So I was stuck in bed, in pain, and I couldn’t move my legs. I even woke Jason up because the night nurse couldn’t understand me. He tried to physically bend my legs at the knee and he couldn’t make it budge. I was miserable.

Because of my ALS my body reacts to surgery differently, and not in a good way. We weren’t prepared for that, nor were informed thoroughly about this before surgery. I was told by one of my ALS nurses that I would have “mild discomfort for a few days”. So imagine our shock and worry when I was having such a rough go. When physical therapy came in the next day, Tuesday, she was very concerned about my muscles in my legs locking out. She told us that I might have to go into a rehab center if we couldn’t get my legs to loosen up. This was a scary moment for me. I have separation anxiety when being away from Jason. Especially at night. He understands what I need or want with looks and head nods. So all day Tuesday we worked on my legs. The 1st day nurse I had was great. Her name was Katrina. She was always available. She listened to me and Jason. The real hero and my favorite doctor who listen to me and didn’t treat me with kid gloves was Dr. W. He was my rehab doctor and he had the best sense of humor. He told me he was not going to send me to rehab and he would get me back to my kids. He came and saw me twice a day. He set the other doctors straight about giving me my medicine. I don’t know what we would have done without him. Then my best nurse ever came into our lives. Her name was Kaylee. She went to bat for me and Jason. She made sure we would have home health when we got home. She was the best.

By the time we left the nurses wanted to put Jason on the payroll. If it hadn’t been for him I would have gone to rehab. Everyone was so scared to get me out of bed. I also learned something about myself… I can’t use the bathroom in bed. So that became a big problem and one of the times certain nurses wouldn’t understand what we were trying to say. I had to be straight cathed multiple times. The doctors wanted to put Foley cath in, but I was against it. If they would just get me out of bed. Finally they listen to us and Dr. W and I got out of bed and was able to go. They couldn’t believe how Jason got me in and out of bed. After that, every nurse and aid knew who Jason was. They would come in the room and ask Jason how they could assist him. When we finally left on Friday I was sad to leave nurse Kaylee and Dr. W they really made an impression on me and I am very thankful for them.

Okay before I wrap this up I know you want to know what it feels like. There are two ways to explain it. First for all of my fellow Ironman fans. The morning after I felt I had the Ironman arc reactor shoved right below my sternum and at the top of my stomach. For my non Ironman fans it felt like a 2 inch PVC pipe shoved in the same place. Which isn’t where I assumed it was going. I thought it would have been right around my belly button. But it’s there now and I’m just fine with that.

Now after it’s been two weeks since surgery I’m glad I did it. It was worth it in the end and I’m glad I did it before I needed it and was already weak. My advice would be to get it done sooner rather than later. My next blog will be about my timeline from my first symptoms to diagnosis to present day for those who haven’t been around for the whole ride. Hopefully I can get it out in the next couple of days. I’m almost back to where I was before my tube placement. My energy levels are still down, but for the most part I am pain free.

~He has a plan and I have a purpose~