Monday, September 3, 2012

Battles: I Choose To Thrive

A lot has happened since my last update, so this may be longer than normal.

My medical state continued to deteriorate quickly and no one knew what to do. My primary care provider (PCP) was very kind an supportive. He admitted he was unfamiliar with tubes, so referred me to a local GI who is supposed to be awesome and is interested in hard to treat cases. In fact, this particular GI is friends with my mom and step father, so this may be better even than I expected. :)

I had been going through some severe, violent episodes of vomiting, leaving me weak at the knees and so very grateful for when the episode passed. However, it kept happening, sometimes for hours. I was tempted many times to just give up the fight due to frustration, pain, and bouts of hopelessness. But I have a God who is bigger than all my problems, and I would (and continue) to ask for that peace that surpasses all understanding. It was and has been granted to me. Every. Single. Time. So I would pick myself off the floor, lay in my bed, and bask in his presence. In fact, that's where I am now as I type this. And listening to Birdy, which I believe is one of the UK's best kept secrets :)

Friday August 31, after a couple weeks of inadequate feeds and horrible vomiting, I decided to venture out anyway. I had been housebound and it was driving me bananas. I rode the public bus out to Wal Mart (yes you may throw rocks at me now). I bought a Gatorade and was sipping it as I perused the makeup aisle. Then the strong gagging sensation hit me and I knew I needed to rush to the bathroom.

This is where the fun began.

We all know the unpleasantries of vomiting, so I will not go into great details of the experience. But as my knees started to buckle, I coughed and gagged as a solid something escaped my esophagus. This is highly unusual, since there has been no solid foods going into my stomach for awhile now.

Confused, I swallowed it hastily since I choked on it and could not breathe. But it continued to gag me and made its way back up. Panicked and curious at the same time, I grabbed hold of it. It was a cylinder object, rough at the end and very long...

It was the jejunal (J) part of my G/J tube.

I swallowed it again and felt the dizzy panic once again, willing my gag reflex to behave itself. I prayed that the tube would stay put, coiled in my chest and not escape into my lung. I made a few calls, trying to find rides to my local emergency room. Finally, success! as my mom was able to take me.

She dropped me off and I explained in a high pitched voice that I was throwing up my feeding tube. My speech was rapid and, I am sure, difficult to understand. They wheeled me to a room immediately. They placed an IV and the first nurse saw immediately what I was talking about. His eyes got wide as he grabbed the nurse that would be taking care of me. I liked her, as she has taken care of me several times before. She got a pinpoint flashlight and peered down my throat. "I don't see anything...". I'm sure I was displaying a look of dismay. "Oh, but I do believe you!" she said reassuringly in her Czech accent. "Just lay back and try to calm down". They gave me Versed and I tried to calm down.

She started updating my (ridiculously long) med list when it happened again. This time she was the one to panic, as the tube was hanging out of my mouth. She ran to get the doctor.

This was a doctor I've had before, and he's very no-nonsense but very caring. He immediately got on the phone with X-ray and endoscopy. Soon, I was given a chest X-ray and a KUB. Endoscopy came with an 18 FR replacement gastrostomy tube.

After some time X-ray called back in a panic. They are not used to G/J tubes in my small home town. Relived that I was going to be taken seriously, I instructed the nervous ER physician on how to remove my MIC-KEY G/J and how to insert the replacement tube to hold the stoma open.

By then my caseworker had shown up and we explained the difference between a gastrostomy (G) tube and a gastrojejunostomy (G/J) tube, and how I needed jejunal access, which I could not get with a G tube alone.

Enter X-ray department.

My local hopital does not have an interventional radiology (IR) department. And they do not stock G/J tubes. So the X-ray doctor remedied the problem by first trying to thread an NG (nasogastric) tube down the G tube. This did not work. So then he threaded an angio-glide catheter (heart stent) down the G tube, which after almost two hours and much pain did produce success. He remarked on how my stomach does not contract at all. I explained my diagnosis of severe gastroparesis. He nodded sympathetically and I was discharged. He cautioned that this was a very temporary solution and to get to University Hospital in Columbia as soon as possible, which is the hospital that handles all of my tube replacements and care.

I kid you not, as soon as I got home, I tried to put one medicine through the catheter and it clogged. Yes, I did cry. Yes, I fell into some self pity.

Yes, I did pick up and go back to the emergency room. And they did unclog it. I pointed out that the stop clock device they put on top of the glide catheter only seemed to accept IV connections. The very nice nurse gave my an IV spike set and told me to figure out a way to alter my feeding bags so that the formula would go through the drip chamber and I could get some nutrition that way. We calculated that the drops needed to fall at 5 drops every 15 seconds to mimic what my pump runs at.

I was able to alter my feed set this way, but I purposely did not include a picture, as if this system were to fall into the wrong hands I could never forgive myself if it were my fault that my system were responsible for someone getting an enteral solution into their veins. FORMULA INFUSED INO THE VEINS WILL KILL A PERSON. NEVER INFUSE AN ENTERAL FEEDING SOLUTIONS INTO AN IV OR CENTRAL LINE.

After all that work, the formula I use ended up being too thick to flow through the drip chamber, even with the roller clamp completely unclamped. And of course, as soon as I tried to give myself medicine via Luer Lock syringe, the glide catheter got clogged again.

Thanks to my mom and step father, the next day I made it up to University Hospital for a REAL G/J tube. Normally when I go for a G/J tube change it is no big deal.

This was not a normal circumstance, however. My vomiting and pain levels were the worst in a long time. I had no veins for an IV. Two IV team nurses took an hour and a half to place an IV and collect blood (my white blood cells are steadily dropping. They are now 2.8. I am sure it is due to the lack of nutrition and hydration, but it is still scary). They gave me Versed and wheeled by bed to IR.

I know this IR team very well. This time it was Dr. D working on me. Kyle, a young man a year older than me was worried. "Why are you back? What happened? You're pale! Are you OK?" I told him a condensed version of what happened. He was a little shaken, to say the least.

Normally the whole procedure takes ten to fifteen minutes. I have a mature tract. I have a high pain tolerance. But this was much different. I told Dr. D right up front I needed something for pain and nausea. So I got Zofran and pain meds. They began working on me, undoing the mess that my local hospital rigged me up with. They had to unclog the glide catheter and it shot the clump of dried medication forcefully into my tender small bowel. The nurse gave me another dose of pain medicine.

Finally, an hour and a half later, my MIC-KEY G/J was back in place. It's a miracle my size was in stock (18FR, 2.5cm stem, 45cm tail) since this not a size they normally keep (the 18FR/45cm tail buttons normally have a longer stem since 2.5cm have shorter tails for kids).

I was returned to short stay with 86% O2 saturation and a blood pressure of 80 over some other low number that I can't remember. I was on bed rest and IV fluids, told I could get up in two hours, then they would call Medicaid cab and I could go home. I was given an emesis basin and they sent a page to the doctor that I needed pain medicine. They were able to get more Zofran for me and later, Morphine and another pain med through my new G/J. Needless to say, it knocked me out for about two hours.

I waited five hours for Medicaid cab, and while I waited I got more Zofran and more pain medicine and skimmed Meme Base. Finally, at 1:30am, I came home. But I did not sleep. The pain and nausea/vomiting kept me up that night. The staff gave me my two pain meds, a PRN anti-emetic, and at around 7am, I fell asleep.

My loving friends sent me wonderful messages via text and FB messages. I am so blessed. As weak ad I felt, I also felt my determination coming back. I had so badly wanted to go back to church that day (it was Sunday), but unrelenting pain and the violent and forceful vomiting kept me from getting out of my apartment until about 2 that afternoon. It was about then I was able to respond to some messages and say another prayer -- a prayer of faith: thank you God for delivering me from this misery.

As the day went on, the pain medicine began to actually take effect, and the force of the nausea subsided. I fell asleep at 7pm Sunday evening and did not wake until 9:30 this morning.

I still feel weak, but despite this I choose to not think of the past weekend as riddled with horror and misfortune. I choose to let go of bitterness and I choose to instead embrace the first really good day I've had in weeks.

The nature of my illness is unpredictable. Normally this sends me into a tailspin. Normally this causes me great distress. Yet now...I choose to laugh. Because no one knows what's coming next. We do know I will be getting separate G and J tubes soon, since my IR doc said that this will continue to happen if it has happened once. We do know that there are other things going on. We do know that nothing is guaranteed to stay the same. The only guarantee is that everything changes.

The sun is filtering in through my blinds. It is evening (how do I change the time below my posts??), and I plan on going for a walk in the park soon. Tomorrow I have a health assessment at the HealthPlex, a gym across from my apartment affiliated with one of the local hospitals. They will fashion a workout plan considering my abilities and limitations and we will establish goals. I am getting in on the rehabilitation rate ($17.50). They will also monitor me on the machines, because I have a little habit of overdoing things :)

I am looking forward to what is coming next. I choose not to fear what comes next. I choose to thrive.

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