Monday, January 30, 2017

Introducing Herman and....????

Drumroll please...Sherman!!!

Out of all the suggestions I received, I think I have settled on Herman and Sherman for my newly separated tubes. Herman will be my G tube since that is the original stoma site, and Sherman gets the distinction of being my brand new J tube. And, as promised, SHOUT OUT to Elizabeth for having suggested the chosen names!

At the risk of sounding like, yet again, a broken record, THANK YOU ALL so much for your prayers. I think I was more nervous for this surgery than I have been for any of my previous procedures. But God answered our prayers in an incredible way on Thursday and this surgery went even better than any of us could have expected.

After my pre-op appointments on Tuesday, the anesthesiologist I had spoken to actually called the doctor who would be overseeing my procedure. He had 2 days to research, and think about what our best options would be for my surgery. Before they took me back, he came to my pre-op room and we talked for maybe 20 minutes about every little detail. He knew which meds were most likely to cause mast cell reactions as well as which were usually safe for mast cell patients. He listened to all my previous issues with anesthesia and what my biggest concerns were. By the time he left the pre-op area, we felt confident that he was as prepared as possible to handle anything that might come up during the surgery.

Leni in pre-op...her head is always too heavy =)
I also got to speak briefly with the GI surgeon before the surgery. He showed me where he was planning to place the new J tube and that I would be able to have a button put in for my G. He also took a few minutes to hear about what had been going on for a few months now. I follow-up with him in a week, and he seemed very engaged and willing to help us get to the bottom of my absorption issues and relentless GI symptoms.

The surgery itself went better than anyone could have anticipated. It was scheduled for 118 minutes, so my mom got a bit of a scare when her pager went off after only 30 minutes saying the doctor was coming out to speak to her. Turns out everything went so smoothly, he was able to do everything that quickly! My anatomy that made it tough to place GJ tubes actually turned out to be beneficial for a surgical J tube. My G and J tubes are only about an inch apart and fairly high up, close to my ribs. There is so much less muscle to have to cut through in the upper abdomen vs. the lower abdomen closer to the hip bones, and I think that is partially why the recovery has not been as bad as I expected. In about 2 months or so, once the stoma has healed completely, I will be able to exchange the long J tube for a J button and be rid of long tubes forever! I am very excited for that =)

While the surgery was quick and I had no major reactions (praise God), we were very aggressive with our pre-treatment medications and continuous medications during the procedure to keep it that way. I typically get benadryl, pepcid, and solumedrol before any procedures, and this time we added in continuous benadryl and racemic epi during the actual surgery to keep my mast cells under control. They had a bit of a challenge placing the breathing tube because my vocal cords started to spasm, but they were able to control that with a muscle relaxant that we knew I tolerated well. We also found that one of my sedation "allergies" I CAN tolerate if we are aggressive with the mast cell protocol before and during. It is more of a mast cell reaction (likely to some of the ingredients and not necessarily the actual medication) vs. true allergy, so keeping my mast cells under control meant I was able to tolerate it well. This is GREAT to know going forward!

I cannot say enough good about the anesthesiologist. He was more than on top of anything that came up, and I don't think we could have done anything differently or better. He also said that for any future surgeries or procedures needing anesthesia that I may need, to call him directly and he would personally oversee me in the OR. While I will hopefully have no need for any more surgery in the near future, I feel as comfortable as I think I ever could feel knowing I have a fantastic anesthesiologist on board who knows what is going on and how to deal with things. We are so thankful for that!

In the PACU before waking up
Even recovery was so much less eventful than we are used to! Although my mom did get some weird looks from the nurses in the recovery unit when she was so unconcerned about me being completely unresponsive for 6+ hours. I think she was just happy I wasn't going in to anaphylaxis or dry heaving or wheezing! It took me a LONG time to wake up. Like I said, 6+ hours of being completely unresponsive to anything going on around me. Poor Leni was very upset when she got to see me in recovery. She kept trying to get me to pet her, but I wasn't responding at all. Although, what was really weird is that I remember almost everything that was said about me or near me in that time. After I woke up, I was able to repeat back parts of conversations that my mom had with the doctors and nurses while I was unresponsive. It was crazy. I remember almost everything that happened during those 6+ hours, but just was not able to respond or move or do anything. It was very weird, but hey, compared to some of my recoveries, we'll take it!

Just woke up in my room!
I spent Thursday night in the hospital to make sure my pain and mast cells were under control. Since I use my J tube for all my emergency meds and some of my daily meds as well, we needed to know that would work before sending me home. We were cautiously optimistic that I'd only need to stay one night, but knew it could be more. Thankfully, as smoothly as things went, I was able to come home on Friday! They gave me some pain medication in the OR before taking me to recovery, and I took some tylenol before bed, but other than that, I did not need anything for pain. I was able to start up my tube medications Thursday night, and by Friday morning was back to running my tube feeds again. I'm definitely sore, but the pain is not bad. I have 4 incisions across my abdomen and the hole they placed the J tube in. By Saturday, the swelling had already decreased significantly and I was able to vent most of the gas they had pumped in out my tubes.

Leni was very ready to snuggle as soon as I woke up.
Overall, things went better than we expected, and we are so grateful! Despite having just had abdominal surgery, I am doing well, and not dealing with many of the anesthesia issues that I have in the past. I am so glad it is over, and now I can adjust to having 2 tubes. Next up is setting up my home infusions which will start this week. I got all the supplies shipped Friday night (with only one mistake that had to be fixed...can't escape it, no matter how hard I try =P), and the nurse will come out to teach me and Nick how to access my port so we can be independent with my infusions. I have my next Xolair and surgery follow-up this week as well, so it will be a busy week. Coming up in February is a consult with nutrition, and my rescheduled functional medication and neurology appointments that I had to change for my surgery. Plus, more Xolair, appointments with my allergist, and whatever else comes up that we have to deal with.

Always a whirlwind in Bokatopia! But for now, we are so thankful that surgery went so much better than we expected, and I am recovering well. We're just taking things one day at a time and doing our best to find reasons to smile every day. Thank you for being a part of our lives in prayer and with your encouragement. We are so grateful for all the prayers said for me and my family for this surgery, and we are glad to be able to share how those prayers were answered more fully than we could have hoped!

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