ALS with Anna Vol 10

I have had problems with my feeding tube from almost the beginning. First the recovery was rough. I spent 5 days in the hospital for what was supposed to be overnight night only. Once I got home things were going good for about a month. Then in April it started hurting around the incision site. It hurt to have any pressure on the insertion point where the tube goes into my stomach. It didn’t hurt to get my feedings or medications though, so we could not figure out what was going on. My doctor told me since it is so high, literally right under my bra line, it might be more sensitive. When they looked at it at my last ALS clinic in April they said it was tighter than most. I was scheduled to get it checked out the next day, but if you remember from my previous post that was a ROUGH trip. I was physically unable to make it. 

Fast forward to May, I’m hurting bad! I can’t stand for anything to touch it. So on May 28th we set off that morning, over the hill and through the woods, to Mayo we go. Jason and I had talked about how nervous I was and my concerns. I had told Jason before I got there that no one touches it without giving me a local pain block or something. Now I’m thinking in my head they are going to do a CT scan to see what was wrong. In reality they had me scheduled for a whole tube replacement. Now you tell me which one you would rather do? I’ll wait….. Yep CT Scan sounds a lot better and less scary. Especially when I was in so much pain. The thought of someone touching it is bad, fully pulling it out and replacing it… Umm no thank you.

When they bring us back I’m in a recovery center, where they bring you after surgery. My spidey senses are going off. Hold up Doc I didn’t sign up for this. In my mind I’m  visualizing myself back peddling. Jason sees the panic in my eyes and almost physical steps between me and the nurses and the cubical where the hospital bed is. Come on, you’ve got to love that guy. He is my biggest advocate. (Metaphorically and Literally lol) The nurses were great don’t get me wrong. Again I had ASS-u-ME-d I was getting a CT first and hopefully only. In reality how were they going to fix anything with just a CT scan. I was just so scared I was living in  NevereverLand where you don’t have adult problems. I am not sure if you are aware but adult problems are rarely fun. I mean problems in general aren’t fun. 

The nurses admittedly started trying to help us feel better about the situation. First they double check the orders. Then they explain if they did a CT and something was wrong they would change it, and if everything was fine they would still need to change it because what I had going on now wasn’t working. So the CT was an unnecessary step, they do the CT while they are changing out the tube. Jason had thoroughly explained how much my tube hurt if it was touched. The nurse never pressured me. They even gave me the option of doing it with anesthesia, but I would have to schedule that and I didn’t want to do that. I was there already, I was tired of hurting, and I don’t do well with anesthesia because of ALS. That left me with only one option, local anesthetic, lidocaine shots.

I would get 3 shots, directly into the area that hurt so bad. I quote from the nurse, “it is going to burn like hell for about 20 seconds, then you will be fine.” I decided to put my big panties on and do the thing. There was only one MAJOR hold up. There was no way I could mentally do it without Jason. I couldn’t do it without him, just thinking about it had me crying uncontrollably. I had to be given Valium. The nurses could see how visibly upset Jason and me both were. They first told us it had to be a sterile environment. Well first of all the nurse who would be going with me just had on her scrubs. They were no more sterile than Jason’s clean clothes. However, one of the nurses explained our situation, my speech and my separation anxiety from Jason, to the doctor. I was so scared I would get back there, something would happen, and they would not be able to understand me. Plus, I was crying and shaking uncontrollably because I was so upset.

The nurse came back with a XL white paper jumpsuit and told Jason if he could get in the suit he could go. We were ecstatic that he could go, but everyone was laughing at the size of the suit and Jason. He said, “Where there is a will, there is a way. It might not all be in one piece, but it will be on.” Now before you go scrolling down for a picture, I’m sad to report we didn’t get one. I know, a HUGE opportunity missed. I’m deeply sorry, You will have to take my word for it, it was as funny as you can imagine. His 6’4 self, trying to squeeze into a jumpsuit meant for someone who was 5’11, at most, 200 pounds. To say he exceeded the height and weight capacity is putting it lightly. By this point we are all happy Jason gets to go. Even the nurses were happ. They saw the sheer panic on our faces, and did whatever they could to accommodate to our needs. I know I have said it before, but I can’t say it enough Mayo in Jacksonville is the best place to receive health care. 

Okay, so by now my Valium has kicked in and I’m coming down from my adrenaline kick. We are getting ready to roll. Jason, the reverse hulk, gets the jumpsuit on. He manages to get it on his legs, BUT when he folds himself into the sleeves and then stands up straight! Ha! This is where the reverse Hulk comes into play. When Jason unfolds himself, standing up straight, you hear nothing but rips and tearing. Then he has to try and zip it up. Ha! This zipper doesn’t quite make it past his belly button, but hey it is on. Sorta lol. Here we go down the hall. Jason, the nurse, and me are all laughing. This is where the jumpsuit really comes in very handy. I am laughing at Jason all the way down the hall, and not focused on what is about to happen. 

We get into the procedure room. They have this really cool inflatable bed sheet like thing under me. They inflated it and they just floated me to the procedure table. It was like a magic carpet ride. I’m glad Jason was with me because once they got me on the table they were going to lay me flat. I can’t breathe or swallow laying flat. So Jason was able to communicate with the nurses and get me a wedge. Then the doctor came in and it was game on. The set up was like so… Jason to my left and by head, doctor to my left, obviously at my stomach lol, a nurse assisting the doctor to my left, and my other nurse to my right. She is the one who told me to wiggle my toes while Jason rubs my head when the doctor gives me the lidocaine shots. Let me tell you… I wiggled the shit out of my toes. The nurse said it helps to have two things going on: Jason rubbing my head and me wiggling my toes. I’m not saying it worked or it didn’t, but I will be doing it next time because I was super focused on my toes. Don’t get me wrong, the shots were not fun. The first two hurt, but that third one ,oooii uuee, that one got my attention. 

True to their word after the shots were over I left nothing! Thank goodness! We were FINALLY able to find out why I was hurting so bad. So what had happened was (LOL) the bumper on the outside was pulled too tight against my skin. It had been rubbing against my skin for months and was completely raw. No wonder it hurt so bad for anyone to touch it. Apparently when it was placed the first time they did it too tight. They said it was red and inflamed. The procedure itself was nothing. I felt a little bit of tugging and pulling. Jason stood by me and watched the whole process. I’m so grateful he was there, I was calm the whole time because of him. I did watch the screen when they put the contrast in to make sure everything was working correctly. That was pretty cool. I could see the tube, my stomach and the beginning of my intestines. 

When they were done, they floated me back to the hospital bed, and away we went. As soon as I got back to “recovery” they were like okay see you later and we were out of there. In  hindsight it was very easy, quick, and simple. But I will still want Jason there next time. Lol. He is my safety blanket. I couldn’t do any of this without him. 

Now it did take me a week to get over the procedure. I was very sore from were I was raw at. My feeding tube still gives me problems. It still gets a little raw, not near as bad, and it hurts to put pressure on it. I don’t know if this is normal. I do know my tube placement is very high. I don’t know if that means I will always have issues. Maybe I was mislead about the after part of a feeding tube. I will do more research, because I was lead to believe once it was healed I wouldn’t even know it was there. Fun fact: I know it’s there 24-7

~He has a plan and I have a purpose~

-ALS with Anna