Tragedy+Time=Comedy

For those keeping track, feeding pump #8 just failed. This one cannot hold a charge adequately. The battery life of my feeding pump should be 18 hours. that gives me full mobility without having to be tethered to a power cord. But pump #8 will only hold 4 1/2 hours of charge, leaving me largely tethered to an outlet. I have called the supplier and pump #9 should arrive Monday.

My fabulous Complex Care Coordinator has found a way for my insurance company to buy me a brand new pump. It requires some minor hoop jumping, but they are on that. My outstanding question is what happens if my brand new pump breaks? After all, shit does happen. So she is looking into that for me too.

In the much less good news department, I got horribly, horribly nauseated Wednesday evening. Even when I am fully medicated, I live with an underlying degree of nausea. It is just my reality. So when I say that my nausea on Wednesday night hit a 9+, I want you to understand just how sick I felt.

I cannot vomit, no matter how badly I want to. My stomach just doesn’t do reverse peristalsis (or even regular peristalsis, which is why I have my beloved Etisarap feeding tube). But on Wednesday, I learned that I can “vomit” out of my G tube. What that entails is me opening up my G tube and my stomach forcefully pushing out whatever stomach contents are in there. Usually a combination of water and bile.

I have regularly have what I call “Angry Stomach.” I feel pressure in my G tube and opening it and letting it drain a bit makes me feel more comfortable. I usually lose just a few milliliters of precious liquid, not enough to dehydrate me.

Wednesday evening was a completely different ballgame. I had Angry Stomach set to 11. And the output just kept going and going. I have no idea where all the liquid was coming from since I have been skirting the edge of adequate hydration levels for the past couple of weeks, but somehow my body just kept going. I drained 150ml of fluid in about 2 hours. Then I went to bed and when I woke up I had drained another 150ml or so.

Side note, one of my super powers is now “vomiting” while I sleep. All it takes is connecting my G tube to a drainage bag and my autonomic nervous system does the rest.

I relayed my tale of woe to my Complex Care Coordinator who then set about getting me in to see my GI. But my GI’s office is completely non-responsive and despite her calling several times a day, it wasn’t until early this afternoon (Friday) that she got a GI on the phone. My GI doesn’t work on Fridays, so she had to really push to get a covering GI to call me.

In between, her medical director was really concerned about my hydration and electrolyte levels and was hoping to at least get those things addressed. Once again, since she couldn’t get a hold of a doctor until this afternoon, the crisis had mostly passed.

I woke up very early this morning with a ranging dehydration headache. But apparently even my body knows when not to put up a fight and I was able to drink about 6oz of seltzer with gatorade first thing after getting up. But my electrolytes are clearly off. I remember the wibbly wobbly feeling from before I started using my high test electrolytes.

The doctor was completely unconcerned about my hydration levels or my electrolytes. In fact, he was downright dismissive about me mentioning them. He also tried to (poorly) tubesplain me, so clearly he was talking out of his ass. I did confirm that it was safe to use a second packet of my uber electrolytes, which I just flushed into my tube. And I am already feeling much better, so this was clearly a case of Eva 1, Doctor 0.

The on-call doctor blamed the scopolamine patches for my Wednesday evening troubles. It was my second patch, and I had no ill effects from the first one. But he suggested I remove it anyway. Apparently my regular GI was also concerned about the scopolamine. Not that he bothered to raise any concerns when I originally asked for the Rx because my nausea management protocol was simply not cutting it anymore. He just told me to make an appointment, which isn’t until the 15th of May.

I asked the on-call doctor what I should do for nausea management because Zofran is only working for a couple of hours, leaving me miserable for a couple of hours before I get my next dose. At first he shrugged (this was a phone call, but I could hear his complete lack of concern in his voice). He then suggested Ativan for the nausea. When I hesitated a bit, he just pushed the Ativan harder. I have to wonder if he selected an anti-anxiety med to calm down this “obviously hysterical” patient. Regardless, I am not one to dismiss possible nausea management tools, so David will go pick up my Rx and I will give it a try. As David says at the very least I won’t be anxious about my nausea.

My Complex Care Coordinator is also busily collecting my records for a future visit to Johns Hopkins Motility Center which is one of the top two motility centers in the US. The second is at the Mayo Clinic in Rochester MN. She currently has all of my medical records except from my current GI. But she just keeps calling them and eventually she will succeed. I will obviously know once more after the folks at Johns Hopkins have had a chance to review my records.

I cannot wait to jettison my current GI in favor of one whose experience includes both motility issues and enteral nutrition. In the meanwhile, I will make do with what I have until September 5th.