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"Once you choose hope, anything is possible" ~Christopher Reeve
Please leave me a comment, it lets me know you’re listening!
Today I am headed in for a double surgery. It’s been one of those “if it can go wrong,” weeks. Not to worry though; we’ve got this.
For a few weeks and a few wasted doctors’ visits, we have been trying to get to the bottom of a fever and severe pain from my J tube. It was finally just discovered that I have what’s called a Buried Bumper. So I will be going in to have it removed from where it’s imbedded, and hopefully they will be able to place a new one right away.
Not to be outdone, yesterday the central line in my chest started infusing everything in a big balloon of swelling on my collar bone, instead of into my heart. This access is very important for me on a daily basis, so they’re going to be removing the old line and giving me a new port at the same time as the first surgery.
Here’s to things always being an adventure, to a good long nap, and to knowing that I am well loved and cared for, even when my middle name seems to be Murphy.
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The results of my manometry testing came rolling in early August, and they weren’t what I hoped. I was hoping that for as uncomfortable as that experience was, it would result in me not needing to rely on a feeding tube any more. Unfortunately the testing showed that there is complete chaos instead of organized communication between my brain and my guts. As my condition has progressed, the nerves of my digestive system have ceased to receive the correct messages from my brain, so my body doesn’t quite know what to do with food.
My doctor had stopped my daily TPN (total parenteral nutrition) back in June to see how I maintained without it. I dropped a quick 15 pounds. He is still holding off on that, but with the recent test results he said I needed to go back to having a J tube to help make up for what I can’t eat by mouth. Since I’ve had so much trouble with past tubes migrating where they shouldn’t be, the decision was made to surgically add another tube directly into my jejunum, and convert my other tube to just a G tube, which sits in my stomach. I was pretty disappointed with this news, as I’d felt like I had been eating and keeping down a decent amount of food. The end story is it’s not enough to maintain my nutrition.
Since I have an important surgery scheduled in October to address a spinal fluid leak, and my Neurosurgeon wants me to gain some weight before then to help with the healing process, the sooner the better for getting my feeding tubes up and running. I was referred to a liver and pancreas surgeon, who would also be getting some important biopsies while he was doing my tubes. I tend to groan each time a new doctor is added to my growing list of specialists, but it didn’t take me long to realize I really liked this guy, and he was doing his best by me. So, we packed up for another trip to the hospital.
The last week in August we had the kids divided up among friends’ houses so that they wouldn’t miss school and my main man could spend the first night in the hospital with me, which is about a two hour drive from our house. The morning of surgery was a rough one; I had learned that because of lack of “real estate,” so to speak, this surgery would not be able to be done arthroscopically, which made me pretty nervous. Everything seemed to be running behind, so it felt like forever sitting in this tiny room with way too much time to think about what was about to happen. Even though I was in the cancer wing of the hospital, they were funny about using my port, and instead I got stuck with a terribly done IV line that was clearly going to prevent me from the writing and drawing I had planned to do during my stay, let alone being able to use my crutches to get around. I was angry, exhausted, and terrified that morning, and when my sweet surgeon peeked in on me at one point, I begged him to just put me to sleep right then.
My sister was quick to pick up on my panic, and during the waiting she Facetimed me with my little nieces and nephews, which did wonders for my heart. Whatever did we do before cell phones?!
Usually I get premedicated before rolling into the operating room, and it tremendously helps knock down the anxiety of that huge, bright room bustling with masked people and all kinds of frightening equipment. This time that didn’t happen, and after kissing my man goodbye I ended up on the operating table very unmedicated with just a couple nurses and no surgeon yet, watching the counting of the piles of hard metal instruments while tears poured uncontrollably, stopping to pool under my ears on the refrigerated-feeling pillow. There are just some moments there are no bootstraps to pull up on, and I’m grateful that in the frenzy of such unrest, I was still kept, eventually whispered off to a peaceful sleep.
Waking up found me with a large incision from ribcage to belly button, and now two tubes instead of one protruding from my belly. My hubs stayed the first night in the hospital with me before heading back to Ohio to care for the kids. Of course things went smoothly until I was alone, when I started experiencing difficulty catching my breath, pain we just couldn’t get on top of, and puking my guts out, which was a new form of torture with the length of my abdomen held in stitches.
The baffling thing was trying to get my nutrition going through my new tube. For some time I had been using Liquid Hope which is a blend of real, actual food, like fruit and veggies and proteins blended up. Well the hospital didn’t carry this, so they were trying to convince me to use one of the formulas they had to offer. Read the ingredients on these some time, it’s disgusting. Sugar and fillers and all kinds of things I shudder to pronunciate. I had tried these early on when I didn’t know any better, and not only did they not help me gain weight, I felt terrible on them. I wasn’t about to throw all that progress away, especially while I was trying to heal from major surgery. The nurses and doctors made it increasingly apparent that they were inconvenienced by my request, and kept sending different people in to try to convince me to have formula. I even asked if the cafeteria would let me order meals and just blend it for me to go through my tube. I don’t think they even checked into that one. When they realized that I wasn’t going to change my mind and I’d just as soon go without than willingly ingest something that makes me sick, they worked out a plan. It was so silly. They were able to get some Liquid Hope, but they said they weren’t able to open it and mix water into it, so they would courier it over to the milk bank at a nearby Children’s Hospital, they would open it and add some water, and then courier it back over to my hospital for me to use. The whole situation was sadly comical, and left me wondering why in a place of health and healing I was having to fight so hard simply to be fed real food. I was not afraid to stand my ground, but how many people are at the mercy of these ridiculous rules, and suffer because they don’t have a voice for themselves? It’s sad, and I hope that we will see a change. Healthy food and nutrition isn’t something that should have to be begged for, nor should anyone be made to feel like a burden for asking for such.
The days in the hospital dragged on, and I grew so frustrated with the way I was treated and the loneliness of sitting there alone, I pleaded with my kind surgeon to spring me loose. I knew I probably wasn’t ready, especially for the two hour car trip over the pothole-riddled highway, but the healing medicine of being back with my loves was a much stronger pull for me by then.
Now it’s close to three weeks later, and I’m still dragging through this recovery, anxious for the day I can cough or sneeze or laugh without feeling like the angry red stripe down my middle has been torn fresh. I am feeling anxious with another surgery on the near horizon, and wondering if I will even feel recovered before parts of this process repeat themselves. For now it’s lots of snuggles, games, and movies with my people in my giant bed, and trying to believe that this too, will pass one day.
Our whirlwind trip to Colorado was a refreshing change of pace, and a huge distraction from some things heavy on my mind. The effort and the community and the fun we enjoyed kept me thoroughly engaged in the present, and not thinking much ahead. At the time this was welcome and helpful, but I guess I should have expected the sting of reality once we rounded the final corner back to our new place.
On the final day of our road trip, while the backseat was munching and crunching on the joys of road snacks, I was sipping liquids for the necessary prep period before a GI procedure I had scheduled for two days later. Since my stomach processes and empties food astronomically slower than the average person, instead of nothing after midnight the day before surgery I get a lovely two and a half days of restrictions.
We arrived back at our landing pad thoroughly delighted and exhausted from our travels, and I only made it through emptying a few bags and sorting some laundry piles before I had to retire for the night. The next morning was a blur of usual appointments; therapy, med refills, a post-op appointment for my little tree whisperer, and trying to get a few loads of laundry pushed through to repack bags to leave for Indianapolis later that afternoon. Since leaving at two in the morning for my check in time didn’t appeal to any of us the day after our road trip, we had decided to head to Indiana the night before and stay in a hotel just a few minutes from the hospital so we could get more restful sleep.
We repacked bags, scurried to find someone to feed our furry best friend for us, and hit the road just before dinner time. I insisted on a detour to the hot soup bar at Kroger so I would have something filling to sip on as the rest of the family chowed down on one of my favorites; Chic fil a. We stopped at the giant candle outlet on the way down, smelled the yummy candles, gawked at the random white peafowl and strange assortment of artisan goods, and arrived in Indianapolis shortly before sunset. The kids were disappointed to learn there wasn’t a pool, and I was thoroughly wiped out, so they headed down to the beautiful college campus/concert venue/park/river walk located 8 floors below our hotel room, and I enjoyed a quiet shower and watching the sun slip down from the sky. It was gorgeous. Every few minutes the colors changed a little more and I just couldn’t look away.
Once the rest of the crowd returned to the room, I listened to their stories of dessert and playing tag and walking by the river, and then we all crawled into bed amused by the booming music of a live concert happening just outside our window. I think we were all so tired that the thundering base vibrating in our chests simply helped lull us to sleep.
Morning came way too early, and it wasn’t until I was in a scratchy gown in the still-quiet hospital that I finally had a moment to remember my fears about the day. I wanted to like my doctor; I wanted to believe that my previous encounters with him were just “off” days where he was stressed or overbooked or tired and that today I would feel reassured by his kindness and answering my questions. Nope. His brief visit with me before anesthesia left me feeling panicked and unsure, and I think if they hadn’t gotten me to sleep so fast I might have had enough second thoughts to hop off the bed and start in the opposite direction.
I woke a few hours later with a double bloody nose, a fat swollen lip, and a nurse snapping at me to stop gagging up blood because it was going to dislodge the tube that was threaded from my nose through to my intestines. It’s been awhile since I’ve been that miserable.
Fortunately my husband was soon at my side, and quick to help buckle my vibrating TouchPoints to my wrists, knowing the back and forth stimulation helps ease my anxiety. I was moved upstairs to a private room where I would remain the rest of the day to be monitored, and was so thankful to be met with the most gracious and compassionate nurse in charge of me that day.
The whole process was generally unpleasant. In an effort to better understand what parts, if any, of my digestive tract are still functioning properly, a thick tube that was comprised of a bunch of tiny water-filled tubes was placed through my nose and throat like an NG tube. Remember when I had one of those earlier on?
This was similar, only way less comfortable because a) it was much stiffer and thicker in diameter, b) he hadn’t been very gentle putting it in, and I was scraped up and bleeding from both nostrils, c) I had to stay tethered to a machine the tube was plugged into to measure the electrical activity of my digestive system, and d) my bottom lip was so smashed up I couldn’t close my mouth because *see (b). It was a long and pretty awful day. A few hours later I had to eat something to see how my stomach would react. Ok, except I had 10 minutes to do it, I couldn’t breathe well through my nose, or chew with my fat lip, and they brought me a turkey sandwich on white bread with mustard. I was like um…. I don’t eat that on a good stomach day, let alone on a day like this. But, that was the rule, and my sweet nurse had cut all the crusts off and cut my sandwich in little square quarters, so I made an effort and managed to choke down two little squares in the 10 minutes. Then more waiting as they measured any electrical changes, punctuated a few times by a cold hard X-ray film being rammed behind my spine to check the tube placement.
Ages later, the testing part was done, and my nurse as gently as possible yanked that tube from my guts through my nose which I have never had done while awake before, and hope to never experience again. Thank goodness for Nancy, the kindest nurse I have met in some time; I survived that whole process. As she wheeled me to my car she was teary-eyed and hugging me and giving me all her direct phone numbers in case I needed anything so I wouldn’t slip through any cracks. It’s the little things people; it truly means a lot whenever I meet people who still seem to have some passion for doing what they do.
I don’t remember a whole lot about the ride home other than how atrociously horrible the Indiana highways are as I was trying to sleep off the events of the day.
Waking up the next morning I had hoped to feel “normal” and have a productive day of finishing the unpacking and getting groceries and things done around home before heading in the next day for another surprise surgery that had been spliced into my life. Unfortunately I woke up feeling extremely drained and really sore, kind of like I’d lost a hard fight. My face was a mess and I was weak and shaky and my legs wanted nothing to do with walking around much at all.
Sooo I pretty much laid in bed and slept and started fighting some serious anxiety about heading into surgery again the following day having not fully recovered from the day before. I had already pushed this several days though because of being in Colorado, and my surgeon didn’t seem to be wasting any time, which made me a little nervous.
A few days before Colorado I had been evaluated for a hard and growing mass between my breast and armpit. I kind of thought it would be nothing, but that didn’t turn out to be the case, and the surgeon I was sent to wasted no time in addressing it. Mind you, these are the weeks I /imagined/ resting and meal-prepping, figuring out who on earth is going to take care of my kids, and working on gaining weight and getting strong because I have two major spinal/abdominal surgeries scheduled in early August. However, my prep time has turned out to be anything but restful, and frankly taking a bit of a toll on my already weary body. *insert free tickets for a warm tropical getaway far away with my loves right -here-*
Last night I got a call that this morning’s surgery got moved earlier, which was honestly fine; the less time awake and thinking about it, the better. Once again I kissed my babies goodbye in the early muted sunlight, and my older kiddos took on the responsibilities of keeping everyone safe and fed and taken care of while us parental units spent more long hours in sterile rooms and squeaky hospital chairs. I hope there is enough summer play time left to balance all of that out.
My surgeon is just an incredible guy. I’m so thankful after my earlier experience this week. He came in bright and early this morning to greet me, answered my questions, marked me up with a purple pen, and took a moment to pray over me before heading to the OR with a “see you in there kid!” It was a much more reassuring experience. Well, that and the hefty dose of versed I got before they rolled me out of pre-op, but for real, having a doctor that treats you like a family member makes all the difference.
I was frustrated with the nurses giving so many reasons they couldn’t use my central line for access and had to stick me for an IV, but after a few attempts they gave up and used my port anyway. Ugh. We couldn’t have just skipped to that part? Oh well.
I hate when I don’t remember going to sleep, but between the exhaustion of a big road trip fused with a jaunt to Indiana and the trauma experienced there running right into today, I was just beat and not a lot to fight with. I remember telling them to be careful of my fat lip when they tubed me, and then the plastic mask going over my face and that was it.
I have done little more than sleep since I’ve been home today. Perhaps that’s why the kids’ bedtimes have now faded into the wee hours of the morning and I haven’t nodded off yet, but between the throbbing of my incision and the weird sleep schedule this week has brought, I imagine it will take a few days to get back on track. My surgeon was pleased with how everything went, and we won’t know any more until results are back from pathology. In the meantime, I’m having serious panic about my surgeries in August, considering trying to convince them to change the dates, and wondering over what things I can and need to prepare at this point only a few weeks away.
I’m so thankful for the distraction of Colorado; that trip kept me from dwelling on the overwhelm of this week and beyond; it has turned out to have enough worries and frustrations of its own. My plan is to rest and recup and hopefully bounce back enough to get the house back right-side-up, maybe a few pictures hung on our bare walls, and work on school shopping and enjoying some of the last few delights this summer has to offer before we swing into a new routine of ALL my little people being in school, and these big surgeries on the horizon. For now my mind is small, and I’m thinking about breakfast and how wonderful it’s going to be to have coffee in a few hours after so many days of having to skip it.
Please leave me a comment, it lets me know you’re listening!