Why We Halted Our Adoption: The Tests – Part 17

As one who thrives off spontaneity, I don’t mind bumps, or even the occasional pothole, in the road called life. Note – I said occasional pothole, not the never-ending, sanctifying “pothole” that has been 2013. 

Over the past few months, though, I’ve learned to embrace the craziness that is my life and have an attitude of thankfulness for being afforded the opportunity to see His hand in so many different, difficult circumstances. After all, how many other people can say they have experienced the highs and lows of adoption, surrogacy, miscarriage, and transplant all within a few months? 😉

Let us review: Why did we halt our adoption?

The simplest answer is because we cannot afford to pursue adoption and surrogacy at once.
*For more on why we before 3 weeks ago we never dreamed surrogacy would be an option,  and how we were both finally at peace with moving forward with our adoption plans, please see Part 1.
*For more on the Facebook message I received 3 weeks ago from practically a perfect stranger that would rock anyone’s world, please see Part 2.
*For more on our surprisingly spirited 1st reaction to that message, please see Part 3.
*For more on the questions we both had, and the emotional struggle I went through, once the surrogacy option was presented to us, please see Part 4.
*For more on the initial, God-filled meeting I had with the woman who strongly felt God may very well be calling her to be our surrogate, please see Part 5.
*For more on the extremely disheartening news we received the day after I met with the woman who appeared to be an angel sent by God to carry our biological child, please see Part 6.
*For more on the strange, but strong, intuition I was feeling just a little over a week after our dream of surrogacy seemed to be slipping from our hands, please see Part 7.
*For more on all the signs that just weren’t going away and ultimately pointing to my intuition being most likely true, please see Part 8.
*For more on the dramatic turn of events that took place one early morning, please see Part 9.
*For more on the painful drive, and then wait at the hospital, I endured while waiting to hear if my intuition was true, please see Part 10.
*For more on the internal conflict I felt when I found out my intuition was wrong, please see Part 11.
*For more on the decision I made to go seek a second doctor’s opinion on what had (or hadn’t) happened, please see Part 12.
*For more on how we found out we had actually miscarried our baby, please see Part 13.
*For more of how the miscarriage affected me emotionally,  and why I chose to share my grief, please see Part 1, Part 2 and Part 3 of my “Redeeming Miscarriage” series.

*For more on the messiness of life, in particular my life, please see Part 14.
*For more on what I never told you had happened after the miscarriage, please see Part 15.
*For more on the possible reasons why I was suddenly not in the best of health, please see Part 16.

I like little get-a-ways with my husband.
I don’t, however, like them being booked for medical reasons instead of pure pleasure.
I guess you take what you can get.

We headed off to Columbus with our deeply discounted hotel reservation in hand, not sure what the next two days held.

We pulled into the familiar Outpatient Parking Lot for Nationwide Children’s Hospital and walked hand-in-hand to the new GI center for my first procedure, placement of the 24 hour pH probe.

If you recall from Part 16, I wasn’t just going through the normal, hard recovery from miscarriage. I was also having a decrease in lung function, and possibly a rise in antibodies; neither were good. If that wasn’t enough (it felt like more than enough, let me tell you), there was also another possible explanation for my decreased lung function.  Once again, the dreaded words “Laryngopharyngeal Reflux,” i.e. “silent” reflux, and “Nissen Fundoplication” were said.

Nothing sparks uneasiness into the heart of a transplant patient’s heart (at least this one’s) like those four strange words. It is an understatement to say they were the last words I ever wanted to hear at that point.

I think upon hearing them, I even said out loud “Shoot me now.”
I just couldn’t help myself.

I didn’t want to be a part of the majority of transplant patients who had been diagnosed with “silent” reflux post-transplant and had to go on to have the horrible (in my mind) Nissen procedure. I didn’t care if there was the possibility that I was unknowingly (hence “silent” reflux) aspirating stomach acid into my lungs, causing corrosion and consequently my lowered lung function. I had absolutely no desire to deal with the effects of the surgery, in particular the fact that if I endured the procedure, I’d never, ever be able to throw up again! 😦

After not too long, my name was called and we headed back.  We went through the usual taking of the vitals, an explanation of how the probe would work, what I could and couldn’t eat while it was inserted, what to do with the buttons on the holster, etc.

Before I knew it, it was time to have the probe placed. From what I had heard countless times from others on a Facebook transplant group, the actual placement would be “horrible,” not to mention the next day of my life. According to some, the next twenty-four hours would be known as the “longest day of my life,” and I would be “in tears” by the time I got the probe out. Furthermore, if the results came back poorly, and I had to have the Nissen surgery, I could pretty much kiss life as I knew it goodbye. Let me tell you, nothing psyches you up to get something done to yourself like reading through dozens of depressing posts from others about their experiences! 😉 Needless to say, after hearing numerous depressing accounts from so many others, I came into things with a lot of trepidation and preconceived, ill notions.

I can’t speak for the others, but I’m happy to report my experience with the tube insertion was far from traumatic. In fact, I was labeled the “best adult patient they’d have seen,” since I didn’t make a peep during the minute or so the few feet (literally) of very, pliable thin tube were placed down my nose. Was it the most comfortable feeling? Of course not! Did it make me feel like I was going to gag? Sure! As I’ve always said, though, what doesn’t kill you only makes you stronger! I’m never been one to whine or freak-out about medical procedures, so I should have known from the start that I’d be OK.

I was whisked off to get an x-ray to make sure the tube was in its proper spot. Once that came back fine, the part of the tube that was sticking out of my nose was taped to my cheek, and I was free to go. For the next 24 hours, I was going to be a prisoner to the tube and the holster on my jeans. Before we left, we chatted with the nurses, who were extremely friendly and helpful, and headed back to the parking lot. The entire thing only took about an hour, which left us the vast majority of our day.

You’re probably asking, “What exactly does one do with a tube in their nose for 24 hours?!”
Well, if you’re me and have no shame, lots of things!

I certainly wasn’t going to waste a day in Columbus sitting in a hotel room, just because I happen to look like a freak and every time I took a step, felt the tube making its presence in the back of my throat (weird feeling, let me tell you). We went and made the most of our day. We walked around Easton (an outdoor shopping center), went to Polaris (an indoor mall), and went to Cheesecake Factory (my favorite) for dinner. Trying on clothes wasn’t the easiest, or fastest, thing to do with a tube in your nose and a holster attached to it, but it certainly made for a fun time! 🙂 As you probably suspected, I got stared at dozens of times during our adventures. If you know me, though, I’ve never been one to care about what complete strangers think of me, so I didn’t mind being the subject of whispered comments (like I couldn’t tell they were talking about me – silly people) said by those with whom I came in contact.

During the course of that day, you name it, we did it. I wouldn’t have had it any other way. You only live once, right? 😉

I can’t say I slept like a rock with the probe – hardly so. Though it disturbed my sleep, it was tolerable. I managed to get a few hours of shut-eye before it was time for testing day #2. I will admit by that morning, I was ready for the tube to come out but far from being “in tears.” I probably shouldn’t have, but now that I had experienced the “horrible probe” for myself, while we drove to the hospital that morning, I couldn’t help but laugh at some of the comments I had seen prior to having the test done. In all honesty, I was baffled by how different my last 24 hours were compared to what had been described time and time again. After living with it myself, I just didn’t understand people’s extreme hatred for such a small piece of tube. I couldn’t speak for them and their experiences. Maybe 99% of people really do have a much worse time with it than I did. Once thing is for certain, though: their comments had me all upset and worried about having the pH probe for nothing! Honestly, I thought the whole thing was a complete breeze. No, I wouldn’t voluntarily sign-up to have it again, but on the same transplant board on which I had read so many “horrifying” tales of individuals’ 24 hour experiences, I was going to be sure to write a very positive review of mine. Others deserved to know the pH probe test can actually be a fun experience, if you don’t take it too seriously.

Don’t get me wrong. At that point, I was still adamantly opposed to having the dreaded Nissen surgery and fervently praying I didn’t need it. Like I said, I hadn’t minded the test to determine if I had a problem, but the thought of having to actually go through with the surgery itself still wasn’t appealing to me – at all.

Once we got back to the hospital, it was only a matter of 20 minutes or so before I was freed and could breathe out of my nose once again. The nurses laughed profusely hearing about all the things I did during my time as the tube’s prisoner. I was happy to bring them some joy, as I’m sure that most people they see (at least from what they told me) are grumpy and far from congenial.

We said our goodbyes, went and got my port accessed, and headed off to our next stop – the bronchoscopy suite.

Now when you think of the word “suite,” what comes to mind? If you’re like me, I picture a very large room (with a view) with a king-sized bed that has a pillow-top mattress and sheets made out of the finest silk. I envision a white, terry cloth robe wrapped around my skin, as I light candles around the perimeter of the already-filled jacuzzi. Oh, yes. Can you picture the tranquility with me?

Sadly, this wasn’t the type of “suite” that awaited me in a different part of the hospital. Instead, I was given a windowless box for a room, a far-from comfortable hospital bed with stiff, old sheets. I was, however, thankfully spared from the paper-thin gown, though sadly no soft robe awaited me. John was given a chair in the corner. Do you know the saddest fact of all, though? I know for the aforementioned items our insurance company paid far more than we would have for the grandeur previously described. Oh, the joys of hospital life! J

We made ourselves “comfortable” and settled in. It wasn’t long before my doctor and nurse were in and the pre-op conversations began. We quickly went over how I’d been feeling (great) and how I tolerated the tube (perfectly).

All was well – that is, until we went over my blood work taken earlier in the week which was finally back from processing. We learned that in a matter of 6 weeks, my antibody count had risen from 17% to 35%. It hadn’t only increased again since the miscarriage, it had doubled. That fact wasn’t good news. No, that was not good news at all.

After such an easy and enjoyable day the day before, talk about taking the wind out of someone’s sails. It became quickly apparent that it was a very good and necessary thing we were taking biopsies of my lungs that day. Maybe the issue really was sudden “silent reflux” (which at that point didn’t sound so bad, after all), but I was skeptical at best (even before hearing the latest antibody numbers) of that being the culprit of my downturn in health. At least in my mind, with my antibodies seemingly out of control, it did not seem plausible that they weren’t contributing at all to my decreased lung function.

After we finished chatting and I signed what I liked to call the “you-could-be-harmed-or-even-die-during-this-procedure-but-now-you-know-and-are-still-giving-me-legal-consent-to-do-it” form, it was time to kiss John goodbye and go off to la-la land for a while.

As I awaited the anesthesia to kick in (I don’t go down easily – shocking, I know) and the bronchoscopy to begin, my mind was plagued with the questions that had been haunting me since I was first told about the mysterious antibodies less than a week after we lost our child.

“What is happening to me, Lord?” “Are we ever going to be able to have a family?” “When is enough, enough?” “Am I going to die because of this?”

If antibody-mediated rejection was indeed setting in, time was of the essence. No second could be wasted. It didn’t matter how I felt. Something was up. The elevated antibodies and simultaneous decreased lung function were players in a developing story; that story was just a subplot in the larger tale called “my life.” At that point, I was just praying the sudden subplot didn’t develop into the main plot, that the whole tale wouldn’t be labeled a “tragedy,” where the protagonist (i.e. me) meets their demise in the end.

Part 18 to come!


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Filed under Adoption, Baby, cystic fibrosis, Health, Life, Marriage, Miscarriage, Sanctification, Transplant

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