So last week I posted on Wednesday how we had already been back to the ER once since I had been discharged from the hospital. I had appointments coming up last week on Thursday and Friday and this week on Monday and Tuesday. We were going to be making some decisions and hopefully trying some new treatment options.
Well...since then, I ended up back in the ER (again) this time due to anaphylaxis needing 2 doses of epi, had my GI consult on Thursday, scheduled emergency surgery for this week, rescheduled the appointments I was supposed to have on Monday and Tuesday, and still talked with my allergist about new treatment options. Yes, Thursday and Friday were a whirlwind of craziness.
Wednesday ended up being a rough day overall with my body just not wanting to play nice at all. Still not sure if it was due to Xolair, but it was just a "not happy Bob" day. I was hoping to be able to keep things under control with my meds at home, but unfortunately that was not the case. About 4 pm or so, Leni started to alert and I knew at that point I had moved beyond just troublesome symptoms to oncoming anaphylaxis. The rest of the day was spent in the ER recovering from needing 2 doses of epi, an ambulance ride in to the ER, and lots of IV meds...and getting more potassium...
On Thursday, my parents (who were in town visiting from VA) drove me downtown for my GI consult. Now, I had been told this appointment would either be fixing or replacing Herman. I went in prepared to potentially have to deal with another round of anesthesia, but also with some questions since Herman had been working alright since I had been out of the hospital. When the GI doctor came in, he took our conversation in a completely different direction that I had anticipated. Long story short, the type of tube I have is notorious for these kinking problems I have been having for the past month. He was shocked I had never had any issues until recently. He said he could replace my current tube, but it would only buy time until I would have the same issues again. The only way to really resolve the kinking issue is to have surgery to separate my G and J tubes.
For those of you new to this blog, I have a GJ feeding tube. This means I have a hole in my stomach where the tube enters my body. The larger tube is the G tube and it ends in my stomach. The J tube is smaller, runs down the inside of the G tube, and extends into the middle portion of my small intestines. Because it has to cover so much distance, there is a lot of tubing to potentially kink or get displaced. This is the issue I am having. The only way to really resolve it for good is to have a separate J tube surgically placed in my intestines. This will significantly shorten the J tube and leave very little available to kink. Because I rely on my tube for almost all my nutrition right now and also need it for emergency medications, I HAVE to have a working tube. So Thursday I will be having surgery to place a J tube in my intestines!
I am still keeping the original Herman. That stoma will be replaced with just a G tube that will end in my stomach like it does now, just without the J extension. The J tube will be done laproscopically and placed directly into a portion of my small intestines. Here is the big dilemma. I will be going from 1 tube to 2...I'm going to need another name for my new tube. I think we have decided that my G tube will remain Herman. He's been there for 2 years, and I really don't think I could call it anything else. BUT that means, I need to come up with a name for my soon-to-be J tube...and that's where you come in! I need suggestions! I am open to retiring the name Herman if someone has any really good ideas for both tubes, but I also would like some ideas for names that could pair with Herman. Right now the leading candidates are Herman and Sherman or Gassy (because I vent gas out my G tube) and Passy (my formula passes through the J tube). Voting and suggestions are open and the winner will be announced in my first blog post after surgery!
I have 5 pre-op appointments now scheduled for Tuesday this week (my other Monday/Tuesday appointments were rescheduled) to make some decisions on what anesthesia will be used, what types of tubes, and other details. As with any procedure involving anesthesia, I am nervous. It's only been a month since my last time having to be put under and that did not end well. We are running through anesthesia options faster than my mast cells degranulate which is not a fun place to be. Please be praying for wisdom and insight as we make some decisions regarding how to best keep me safe during surgery. I will likely be admitted overnight (and hopefully ONLY overnight) to make sure things are okay, so we are hoping to be home on Friday. Going forward, this will simplify tube changes significantly as I will no longer have to be put under which is fantastic in the long run, but I still have to get through surgery next week...
On top of the excitement of surgery next Thursday, we also have some coordinating to do with my insurance and home healthcare to start setting up this week. At my appointment with my allergist on Friday, we talked about how bad things are and what we need to do to get me stable. Obviously the ultimate goal would be for actual improvement, but step one is just getting me stable. Since my GI tract is still throwing a fit, oral (and even tube) medications are not a great option right now. Since I have my port, we now have the ability to do IV treatments at home. We are working on setting up some regular infusions to hopefully help stabilize my electrolytes and get me hydrated as well as having access to IV medications at home. We are hoping that this will give us the ability to keep things under better control at home and not need to be rushing to the ER nearly as frequently.
Whew...stopping to take a breath...
Not going to lie, things feel overwhelming. A lot happened in less than 48 hours...I think I'm still processing through stuff. We are very hopeful that being able to access Mort at home will help regain some control over my symptoms and get things more stable. We saw the benefit I got from IV fluids, electrolytes, and medications when I was in the hospital earlier this month, so I am looking forward to getting this set up. At the same time, though, I'm dreading it...
In my head, home IV access was always reserved for the most severe mast cell patients. That was never supposed to be me...yet here I am...What went wrong? I was doing SO WELL for 10 months of last year! What changed? Why is everything crumbling again? I thought we had moved beyond the really rough days, and I was going to be a "success story" of effective mast cell treatment. Instead, I'm finding myself in a position of needing care that I watched my doctor prescribe for some of the more severe mast cell patients. I'm looking forward to the benefit that we are hopeful I will get from the home IV access, but at the same time there is a part of me that feels like if I just hold off then maybe it means I'm not really THAT sick...Don't worry, I know there's no logic in that. We're in the process of setting everything up, but that doesn't mean my head fully accepts that this is where I'm at right now.
Along with everything running through my head for that, I'm also dealing with having less than a week to mentally prepare for abdominal surgery. Especially with this surgery not even really being on the table before Thursday, it feels like things are happening so quickly. We are at peace with this decision. We do feel this is the best option for my needs right now, but that doesn't mean I'm not nervous. There are always risks with any surgery and my mast cells just add another layer of risk. Add to that the fact that the doctors who will be in the room with me may not have even heard of mast cell disease before meeting me, and I'm having to bring them up to speed in a 15 minute pre-op appointment...we do everything we can, then just have to leave it in God's hands.
Please keep me and my family in your prayers this week! Pray for my pre-op appointments tomorrow that they would accomplish exactly what we need to resolve. Pray that we will come away with answers and feeling as prepared as possible for Thursday. Pray for wisdom for the doctors during surgery that they are able to manage any issues that may arise and able to complete the surgery with few problems. Pray for safe travel for my mom as she is driving (back) out on Wednesday to be with me for the surgery. Pray for peace for Nick and our families on Thursday while I am in surgery and recovering. And please pray that in everything going on this week, we will be able to keep our eyes and hearts fixed on God. Let Him shine through us and remind us that He is carrying us through this season of life.
As always, THANK YOU for your prayers and support! As I was writing yesterday's post about it being 2 years since my official diagnosis, I was thinking about how much has happened in that time. A lot has changed...some good, some not so good. God has been constant, but so has the support of our incredible network of family and friends. We are so grateful for all the prayers and encouragement over the years and everyone walking through this crazy journey of life with mast cell disease alongside us. Thank you.
I hope you're ready for year 3!