Wednesday, December 14, 2016

Tube Change: Check

Mission: Take Back Ground From the Nasty Masties

Phase 1: Feeding Tube Change

Status: Success...with some excitement...

This week was the start of a crazy week of procedures, travel, and more procedures. As I mentioned in my previous post, we decided to change my feeding tube to see if that would help resolve any of my relentless GI symptoms. This was done yesterday, and I am glad to say the tube change went well! Everything else was a bit rougher, but I did make it home late last night...about 11:30 pm...it was a long day...

Our first challenge was keeping my blood sugar stable from midnight (which was more like 9 pm when I went to bed) until 2 pm when it was time for my procedure. Thankfully we had no hiccups with this and while was sugar was low normal when they tested, it was not super low. Yay for small blessings! Next up was making sure everyone knew what was going on and what meds I needed PRIOR to the tube change as well as during the procedures. This was a little less smooth sailing, but eventually we did get things straightened out with the anesthesiologist and doctors. I think when we mentioned that I'm a high risk for anaphylaxis and they needed to have Epi ready in the procedure room that they started to realize they needed to take things seriously.


The anesthesiologist ended up being absolutely fabulous and stayed in the room with me the whole time (instead of rotating between rooms) and did a great job keeping me as stable as possible. Unfortunately, I ended up reacting to one of the medications they gave me during the procedure so we have yet another anesthesia medication to cross off the safe-for-kylene list. This also meant that recovery was a bit more exciting than we hoped...

I don't remember most of the day...I remember being taken into the procedure room around 3 pm and the anesthesiologist assuring me that he and his team would take good care of me. Then I remember small bits and pieces in recovery, but I wasn't fully conscious until about 9/9:30 pm. In between, there was some inhaled epinephrine, more benadryl and pepcid (I got some prior to the procedure as well), steroids, more fluids, lots of nurses, a couple doctors, and 3 different recovery units.

Thankfully while it wasn't until almost midnight, I was able to come home last night. Plus, since I got so many different IV medications, I was finally able to sleep through the night and have a relatively quiet mast cell day today! That has been one nice fall out from the anesthesia...got to find the silver lining, right???

More IV fun...
 Anyway, all that to say, Herman III is now Herman IV! We are hoping and praying this helps resolve some of the rough GI issues I've been having the past couple of months, but we probably won't be able to tell for a few days and all the meds get out of my system and my GI tract wakes up from all the anesthesia. In the meantime, I'm getting used to Herman IV.

While I've now had a feeding tube for almost 2 years, I have a different type of tube than I've had the previous 3 tubes. Herman I was an NJ tube which went down my nose into my intestines. Herman II and III were PEG-J tubes that were a bumper style tube. This means that they were held in place with an interior bumper to keep the tube from falling out. I really liked having that style of tube because it felt really secure and I didn't really worry too much if I accidentally snagged it because I knew it was held in place.

Because Herman IV was placed as an emergency tube change, there wasn't time to make sure the type of tube I wanted was available. That means this time, I have what is known as a balloon style tube. Instead of a bumper on the inside, there is a balloon that is inflated with water that holds the tube in place. I'm not really sure what to expect with this type of tube. It makes me feel a bit nervous that it's not as secure, but I guess I just need to make sure I don't snag it on anything =P One thing I DO like is that this tube is much shorter than Herman III which has been nice because it doesn't hang down as far and get caught on things or get in the way. So I guess Herman IV is growing on me and I'll give =this balloon tube a chance. Not like I really have a choice at this point anyway... =P

Welcome Herman IV!!!
Next up is our trip to MN to see Dr. Afrin! We were hoping to be able to fly with an organization that provides free flights to patients needing out of state medical treatment or appointments. Unfortunately, there is a snow storm heading to MN this weekend...since the planes are private, small planes, they are not able to fly in bad weather. That means our flights had to be cancelled. =(

So we are road tripping yet again! Nick and I are heading out tonight to get a few hours in, then we'll finish the drive tomorrow. My appointment is on Friday, and we'll decide when we start the drive home depending on the weather conditions.

Thank you for your prayers for the tube change! I am glad that it is over, and we're on to the next part of this crazy week. We are looking forward to being able to talk with Dr. Afrin about these recent symptoms and see what his recommendations are for better management since what we're doing right now is clearly not working so well anymore. We are praying that my body tolerates the trip well, especially as the medications wear off. Once we get back, it will on to my next Xolair injection and the port placement. We're trying to take everything just one step at a time, even though sometimes it feels overwhelming. Thank you for being a part of this crazy life of ours through your prayers and encouragement! Stay tuned for more details about our trip, the appointment, and whatever else fun stuff I can come up with to share!

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