Wednesday, April 27, 2016

Endoscopy and Tube Change

Herman II is no more! Please give a warm welcome to Herman III. I tried to rename him, I really did, but somehow after more than a year of calling my tube Herman, I'm just not able to change. So Herman he will remain.

So yes, I had a tube change yesterday as well as an endoscopy where they took some biopsies to see how the Xolair is working as well as doing an endoscopic ultrasound. It was a busy morning! At least it was for my doctors =P I was out!

I was really nervous going in. There were so many moving pieces, and this was my first procedure done at the Clinic so I really had no idea going in what to expect. My previous GI had sent all my records ahead of time but there was some miscommunication and it didn't appear that the doctors had seen anything before yesterday. When we got there, the doctors weren't even clear exactly what procedures I was having done...yeah, that didn't make me feel more comfortable!

However, what did help me stay calm was talking with each of the doctors, the anesthesiologist, and the nurses prior to the procedures. Knowing exactly what was going to happen and being able to ask questions and confirm what I had been told before let me take a breath before they took me back.

One thing I was especially nervous about was the anesthesia. I have had multiple severe reactions to conscious sedation, so I have to go under full general anesthesia...and I still had some issues with that when I had my first PEG-J placed a year ago. Thankfully, the anesthesiologist yesterday listened to my concerns about the reactions I had in the past, read over the notes from my previous GI about the issues I had during the tube placement last year, and offered a few suggestions and asked questions. He was very professional and seemed comfortable handling my case even knowing the potential for issues. Just before they put me under, he assured me that they had epi ready, more benadryl available, and breathing treatments on hand for any issues. Not saying the thought of them needing that was comforting, but the fact that he took an extra moment to reassure me was.

I did take a while to wake up. That is pretty typical for me, so it wasn't a huge surprise, but apparently the nurses in recovery weren't informed of that so they were a bit worried. I was told that I had some dry heaving and breathing issues as I was waking up so they gave me some nausea medication and a breathing treatment, but I actually don't remember any of that. What I do remember is when they brought Nick back and Leni jumped up in bed with me to snuggle. I have to say, I've had a bunch of procedures, and waking up to Leni is probably my favorite way to wake up!

If anyone with a service dog is reading this and curious about how it working having her with me, here's what we did. Leni was able to be with me in the admitting area and prep room before my procedure. My husband was with me, too. Always ask if whoever you brought with you can come back because usually there is a good wait before you actually go back for the procedure and it is nice to have someone with you. Nick and I did some Mad Libs which gave me the chance to laugh and keep my mind off being nervous. I highly recommend some form of distraction =P

Leni could not stay with me during the procedure. That room is considered sterile, so the hospital is allowed to deny Leni access to that area even as a service dog. She stayed with Nick in the waiting area during my procedure. He took her out for a walk and to go to the bathroom, but for the most part, she just curled up under his chair. In recovery they typically don't call whoever you brought with you until you are at least somewhat awake and aware. Once they could tell I was starting to wake up, they brought Nick back and Leni came too. Like I said, waking up to my snuggly girl is probably my favorite way to wake up! I've had her with me at multiple different ERs, hospitals, doctors offices, blood labs, etc. and never had any access issues and the nurses always seem to love her.

Once I woke up a bit more and was able to communicate and at least open one eye at a time (I was seeing double and extremely dizzy for quite a while), they cleared me to go home. I continued to recover last night, slept well last night, and am doing pretty good this morning. Two thumbs up for Cleveland Clinic and their care and management of everything for me yesterday!

So what actually happened during the procedure?

Well, I now have Herman III! In the words of Shakespeare, "Parting is such sweet sorrow." Yes, as much as Herman II and I had been through together, it was time. I think I was starting to grow my own species of mold in Herman II plus my once clear tube was now a beautiful green/brown camo yes, we bid farewell to Herman II and gladly welcomed Herman III as his successor. Herman III is very similar to what I had before with a few differences. He is considerably longer than Herman II which so far has only proven to be a slight inconvenience with 2 dogs that enjoy cuddling me getting more active; however, I'm sure I'll get used to it. The tubing is from a different company, but other than that, it's pretty much what I had before. They were even able to keep the color-coded tube caps (yellow for my J tube, red for my G tube) so I don't get them mixed up!

I also had an endoscopic ultrasound where they put a probe down and were able to use sound waves to gather information about the lining of my stomach and small intestines as well as looking at my pancreas. My stomach and intestinal wall looked normal which was good. That means that despite my motility issues, it doesn't appear that any structural changes are contributing to that. There were some abnormalities noted throughout my pancreas, so I will be following up with my GI and endocrinologist to discuss what that means.

The last thing they did was to take multiple biopsies throughout my stomach and intestines. I have had these done before which were part of my mast cell diagnosis. In theory, we should see some changes in the mast cell staining since I am seeing improvement with Xolair, but we'll just have to wait and see.

I know I finish almost every post with this, but THANK YOU. I mean that every time I say it. I was very nervous about this procedure. Yet, somehow (prayfully) I was able to let go of my fear and go in calmly and at peace. I much prefer being on the giving end of prayers and serving, and it is humbling to be in this position for such a long time. During this season of life, though, I am learning to receive graciously whether prayers or help or time. That has been and is a hard lesson, but it is also making me more aware of what it is like for those that I have given to. I hope that as I am thanking you in practically every post that my sincere appreciation and gratitude is coming through. It is not just something I am saying because I'm expected to. I truly see and feel your prayers carrying me through every step of this. I hope that you are encouraged hearing how your prayers are lifting us up and that you are able to rejoice with us as we ARE seeing victory over these past few weeks.

Thank you. Thank you so much.


  1. You are such a strong, beautiful young lady! I admire your spirit and ability to look and see God's love and faithfulness through all you are experiencing. Keep writing !
    My love and prayers are with you.

    1. Thank you =) So sad I missed you while I was in VA! Next time we will have to meet up!

  2. You are such a strong, beautiful young lady! I admire your spirit and ability to look and see God's love and faithfulness through all you are experiencing. Keep writing !
    My love and prayers are with you.