The following is Part I of the account of the last week and a half. The writer is David, because if we were waiting for Eva to be up for writing, it might be a while.
On Wednesday, May 3, Eva’s nausea ramped up to intolerable levels. She lives with constant nausea, so when she says it’s bad, it’s pretty awful. She could no longer take in liquid orally. At the time, she was still able to tolerate some jello and tiny fruit juice popsicles.
At the same time, she was starting to vent large quantities of fluid through her G-tube (gastric-tube, i.e., from the stomach). She vented roughly 150 ml in a couple of hours. This is very unusual, but not a unique occurrence for Eva.
By the next day, her J tube (jejunum-tube, the beginning of the small intestine) wanted in on the action and was insisting on venting small amounts of bile. This is a unique occurrence. Eva was using medical marijuana, Zofran, ginger and a scopolamine patch to try to control nausea, to no avail.
As an aside, these events of 10 days ago are so hazy in either of our minds, that I’m looking back to text chains of conversations with our complex care coordinator to reconstruct things. It has been a long week and a half.
Eva’s current GI was unavailable for conversations on this Thursday.
On Friday, Eva’s GI is off. But we did manage to have a conversation with the on call GI at his practice, who pulled Eva off the scopolamine and put her on a dose of Ativan.
At this point, Eva is feeling her electrolytes getting out of whack. One of the issues around gastroparesis is that the body processes salt differently and requires much more of it. Eva normally uses a packet of electrolytes for high intensity athletes daily. But she also requires regular hydration because the free water available in her formula is limited, and what she can drink is extremely limited, and she wasn’t getting enough extra in her flushes (syringes of water used to clear the j-tube every four hours or so during awake hours). This is about to become relevant.
Saturday, things are getting worse. Eva is feeling “wonky and woozy.” Electrolytes are out of balance, she is dehydrated. We clearly need to get Eva some IV hydration.
This seems like something simple to do. There are spas that offer IV hydration. We figure we will just show up at an urgent care around the corner and get this dealt with. No big deal.
Big deal. Apparently urgent care doesn’t do hydration. Apparently the spas aren’t as set up to do this as their advertising claims. The complex care coordinators are not wild about us having a nurse come to the house to administer hydration because they’d kind of like testing available, just in case. This means . . . off to the hospital.
But remember, this isn’t a big deal, we just need a bag of saline water to flow into Eva’s veins. We were originally looking to do this at an urgent care. So, instead of heading into Manhattan to a serious hospital, we head to a minor hospital in Queens (albeit one in the same medical system that we are moving our care to–NY Presbyterian).
We arrive around two. We sit in the waiting area. For hours. Until around 5. Which sort of makes sense, because Eva doesn’t present as a particularly urgent case. Then they bring us into the treatment areas.
We explain to a PA (physician’s assistant) what the issue is (nausea, venting through G tube and a bit through J tube, dehydration. The PA is clearly confused. We realize the PA has no idea what a GJ tube is. We educate the PA (Eva feeds through the J tube, vents through the G tube . . .).
By around 6:00, maybe, we are talking with an attending. Who isn’t quite sure what to do. She’s willing to do the saline and all, but she wants to know what normally happens when we come in for treatment. Should she be admitting Eva for in-patient care? Fun fact: this is our first time on this rodeo–we don’t know what we need. That’s why she’s the doctor. This is when we realize that there is no situation when it’s a good idea to take Eva to a less than major hospital. Nothing with Eva’s health is ever simple.
They finally get her some IV Zofran for the nausea and a hydration bag at around 7:00 PM. Five hours after we arrived at the ED (Emergency Department).
IV Zofran is Eva’s favorite drug. Like ever. It is magic for her. It makes the nausea go away. Every time. Until now. It does nothing this time.
By 9:00 PM the fluid has fully entered Eva’s system and the off kilter, woozy feeling has retreated. They give Eva another dose of IV Zofran and send us home. The second dose reduces the nausea to a tolerable but still pretty significant level. Eva and I are beginning to have intimations that this may turn into a “thing