Monday, April 24, 2017

From the Hospital to VA in 24 Hours

Last week was not the week we had expected...

Saturday Nick and I did some fun house hunting with my parents who came to Ohio for Easter weekend. Sunday morning I woke up with major pain in my stomach close to my J tube. I didn't actually think the pain was related to my tube since running my feeds was fine and didn't cause any additional discomfort, but we later found out that was not the case. I was determined to make it to church for Easter, though...It had been almost 2 months since I had made it to church thanks to my nasty masties and I REALLY, REALLY wanted to be there on Easter. 

Well, we made it to church...but I spent almost the entire service attempting to dislocate Nick's hand as I was clenching it as hard as I could. I couldn't sit up, couldn't take deep breaths, could barely speak, and sat listening to the sermon with tears streaming down my face because the pain was intensifying. Nick brought the car around and we left church to go straight to the ER.

Up until the ER, I wasn't really focused on how bad the pain was. I knew I was hurting, but I also knew that we had always been able to get my bad pain under control with some IV meds and we'd be heading home in a few hours. After a few hours in the ER, I had been given 4 rounds of my normal pain medication (which is a 1/4 dose of a standard adult dose) and had almost no relief. I think that is when it hit me that something might actually be wrong. They did a CT scan of my abdomen and found pretty significant swelling in my intestines around my J tube. I still wasn't convinced the pain was related to my tube, but they sent the scans to the GI team at the hospital who felt that the balloon holding my tube in place may have gotten dislodged. I was still in severe pain, so we tried a new medication (at an 1/8 of a normal adult dose) that thankfully took away the pain, but also came with the side effect of making me mostly unresponsive.

Apparently my tremors and unresponsiveness (both side effects of the pain med) made the EMTs who transported me from the ER to the hospital a bit uncomfortable so when we arrived, the admitting doctor immediately ordered an EEG and some anti-convulsive meds thinking I was having a seizure. Thankfully Nick was not far behind the ambulance and they were willing to hold off and listen to him tell them that as long as my vitals were stable, they didn't need to worry. That EEG would come back a few days later, but at the time, things were relatively controlled.

That all happened Sunday afternoon/evening. The next 2 days were filled with severe pain, tremors, high doses (for me) of pain meds, spending hours in somewhat of a drugged sleep to keep the pain at bay, and waiting for doctors to round to figure out what to do. The GI team and GI surgeon said that the CT showed that the balloon holding my tube in place had deflated and was stuck against my intestinal wall. Plan A was for them to try to reposition it in Interventional Radiology (IR). If that didn't work, then Plan B would be surgery to try to fix the problem. Unfortunately, this got held up an extra day as they were waiting on records from the Cleveland Clinic about my J tube procedure so if surgery was needed, they could be prepared with all my medication protocols. Glad they were making sure they were ready in case surgery was needed, but in the meantime I spent another day in some of the worst pain I've ever felt.

Wednesday morning was the day of the procedure, and it was a mess from the start. As a rare disease patient, I know it is my responsibility to be on top of my care even in the hospital and my family is very capable of managing that when I'm unable to. However, even the best laid plans and preparation can go awry when there are so many pieces out of our control.

The IR team called and said they would be coming to get me about 11:30 am. We had purposefully timed my morning pain meds and mast cell meds so that they would be in full force for the procedure to hopefully minimize any potential reaction. Except even though they brought me down about when they said, I waited over 3 hrs before they got to my procedure. That meant that my pain meds and mast cell meds had time to wear off before I even got to the procedure room...

And that's where the "fun" started...I was starting to shake from pain again, so the nurses in IR called my nurse on the floor to ask what pain meds I had been on. She told them what I had been taking for the past few days, but instead of them giving me one of the meds, they gave me both at once...I am EXTREMELY sensitive to pain medications (even when in severe pain), and both at once made me completely unresponsive. The nurses in IR were not prepared for that and kind of freaked out. They decided to give me another medication to reverse the effects of the pain meds, which woke me up, but also started causing a mast cell reaction...more benadryl on board and thankfully that was controlled. Then the real fun began...

Because they had reversed the effects of the pain meds, when the surgeon started the procedure the severe pain I had been dealing with the past few days just intensified. It was pain like I have never experienced...even compared to pain after my abdominal surgeries. They did start to give me more pain medications during the procedure, but nothing really kicked in until the surgeon was finished. Unfortunately, it also took a bit longer than expected because the displacement was worse than they had thought. Initially they thought the balloon holding my J tube in place had started to get imbedded in my intestinal wall. When the surgeon started the procedure, he discovered that the balloon had actually deflated enough to slip out of my intestines and was being to adhere itself to my abdominal wall while a small part of the balloon was still in my intestines. Thankfully he was still able to fix it in IR with no surgery needed, but it was an incredibly painful 30 minutes.

The CT scan after the procedure confirmed my tube was back in place, and thankfully the second round of pain meds finally started to kick in. Once the IR team felt comfortable that I was not going unresponsive again or still in severe pain, they sent me back to my room. Despite still being in pain from the procedure itself, I could tell very soon after that the problem had been resolved. The sharp, shooting pain that came with every deep breath, any amount of light touch, and any movement was gone and replaced with intense soreness like a badly pulled muscle. I cannot put into words the relief that my entire body felt when that pain was finally gone.

Wednesday after the procedure. First time since being admitted
I was actually able to sit up without severe pain.
Despite having been taken down to IR about 11:30 for a 30 minute procedure, it was almost 4 pm by the time I got back to my room. We had discussed leaving Wednesday night assuming the procedure went well, but decided to stay an additional night for pain management. Even though the pain for the most part was gone, I was terrified of it coming back in the middle of the night and not being able to do anything about it. It ended up being a non-issue because the doctor came in not much later to tell us the EEG had revealed some abnormal activity and that I would need a brain MRI so I'd have to stay one more night anyway.

I did need one more round of pain medications Wednesday night before bed, but thankfully was able to make it through the night without needing any more. Thursday we got the all clear from the GI team and neurology gave the okay for me to be discharged as long as I followed up with my neurologist. Escape the Room: Hospital Version = Complete April 2017!

To be honest, this hospital stay was very different from many of my previous admissions. Usually I end up being admitted for uncontrolled mast cell reactions. It's a matter of using IV meds to get things back under control, then sending me home to see how long I can make it until it happens again. Nothing really gets resolved, we just get me a bit more stable for a time. This time, we left actually having resolved the reason I had been admitted! Not always the case for rare disease patients or anyone with chronic illness, but we are thankful that this was something that could be fixed, and I could actually leave the hospital feeling "better."

Friday was spent resting and PACKING. Yes, I did just say packing. Less than a day after being discharged from the hospital, Nick and I road tripped down to VA for my college alumni soccer game and visit some close friends. No, I did not play in the game =P Herman, Sherman, and Mort kinda keep me from any contact sports for now...and my mast cells are doing there part to keep me from being able to run at all, so Nick and I just watched. But it was great to catch up with some people and have time to spend with our friends who graciously allowed us (and both dogs?!?!) to stay with them this weekend.

Sometimes I think our dogs are broken...
Initially I thought it would be tough to watch everyone I used to play with and be unable to play myself. Well, the 50 degree weather with pouring rain and wind kinda helped me not miss it *too* much! But it is hard sometimes when I'm reminded of how far I am from where I used to be and what I used to be able to do. I don't struggle a lot with comparing myself to other people and feeling discouraged about not measuring up, but I do struggle a lot with comparing me now to who I used to be and feeling discouraged about all the things I can no longer do. I miss being able to play soccer and swim and run. I miss being able to get up for 6 am lifting or swim practice, have a full day of classes, more practice in the afternoon, meals, go to FCA, do homework, then go to bed just to wake up to do it all over again. I miss life before my mast cells were in control.

But I am thankful for the memories. Even though some days they are more painful, I am thankful for the time I did have to do those things. In high school and college we always joked I was busy enough for 3 people. I was always a go-go-go type of person who liked to be rushing around and did well with little to no "free" time. Maybe those years of craziness were God's gift to me knowing that in a few years I'd be unable to do many of those things. Maybe He gave me the strength and energy to be able to even the crazy amount of activity I did for those years so that I'd have all those memories to sustain me when things would get tough.

Despite doing very little all weekend, by Sunday night, I was exhausted. I am glad we decided to go ahead with our trip to VA that we had been planning for a few months now, but especially after the week we had in the hospital last week, I was wiped. I know some people probably think we're crazy for taking a road trip less than 24 hrs after getting out of the hospital, but the reality is that if we waited for the perfect conditions and ideal health, we might be waiting forever and watching life pass us by. Living with a chronic illness means that I often choose to push myself knowing I may pay for it later so that we can have some moments of victory over my mast cells. Sometimes I may miscalculate and end up suffering major repercussions for those choices. But sometimes we're able to walk the fine line that lies between pushing things too far and not allowing my mast cells to completely dictate how I live. Nick and I managed to find that fine line this weekend and have a good weekend with each other and friends. And we won't even really know if I really do crash from this trip because I'm getting Xolair today so that will mask any crashing symptoms! Small blessings... =)


This past week was NOT the week we expected. We are thankful it is over and that my J tube was able to be fixed without surgery. We are so very thankful that we were able to make the trip down to VA this weekend and see one of my best friends and her husband. We might not have expected last week, but let's be honest, our whole life is nothing we could have anticipated. We're still finding reasons to smile every day and praying that our lives reflect God's goodness even in the tough moments. Ain't no mast cells gonna stop us!

1 comment:

  1. Glad you were able to spend some time with Liz. They were looking forward to time with you.

    ReplyDelete