Before we go back into the past, here is a short update from today. As directed, I sent my GI an update this morning at 10am. When I hadn’t heard back by almost 3, my complex care coordinator called the office for the second nudge of the day (the first, earlier in the day, confirmed that he had read it). Time is of the essence because the office closes at 4pm, and he is off Fridays, so if I don’t get a response today, the earliest I will hear back is Monday.
His response is mostly useless. He says to increase my Lyrica to 3x/day in a couple of days (reiterating what he told me at my appointment on Monday), but did not answer any of my questions about hydration, nutrition or possible causes for this “whatever is going on with me.”
I wrote back telling him that I have not urinated since the few drops I squeezed out last night before bed at 10pm. I then reiterated my question about when we should be considering home hydration. My complex care coordinator then promptly called the office to make sure that he read my response.
Now, I will turn the blog over to David,
Sunday, May 8, Eva sleeps a lot of the day, spends a few hours sitting up, but is feeling pretty crappy all day. It gets worse as it becomes evening. Eva is lying absolutely still on the bed, in the one position that is slightly less uncomfortable than the others. Horrible nausea. Dysautonomia resulting in alternating sweats and chills. Eva would have gone to the ED, except it seems like they can’t do anything to help. She is venting as much as 500 ml overnight.
Monday morning is no better. Eva spends all of Monday in bed. We still can’t get ahold of Eva’s GI, but the complex care coordinator gets us an appointment for Tuesday morning with another doctor in the office, and her GI says he will call her. N
Eva’s GI cancels the appointment for Tuesday with his associate. Eva’s case is too complex for someone else to deal with. He says he tried to call but didn’t even get voicemail (Eva’s phone absolutely has voicemail set up and several of us called Eva’s phone and it worked just fine). We leave Eva’s number and my number to make sure he has the right phone number plus a backup. He says he will call back. He doesn’t.
Eva’s jejunum (the very beginning of the small intestine, and the body part that gives “j” to Eva’s “G-J tube”) is becoming sore. This is a new symptom for Eva and will become part of an ongoing set of issues that involve the intestines (as opposed to the stomach, which is where gastroparesis manifests).
By Monday evening, we are beginning to think about whether Eva is heading for an in-patient stay at the hospital.
A word about Dancer. Throughout the time Eva has been sick, he has been taking great care of Eva, spending however many hours a day in bed with Eva, snuggling with her, and nosing at her and even nipping at her if she starts to get up and he doesn’t think she is feeling well enough for that. [FWIW, he isn’t wrong in his concern. – ed.] We aren’t sure we particularly approve of the last behavior, but it seems to come from a place of love and concern.
Tuesday morning (May 9), Eva wakes up outrageously early in pain. After consulting with the complex care coordinator, she wakes me about 8 AM and we are into the NY Presbyterian Cornell Weill Hospital Emergency Department (ED) at 10:00 AM. Immediately, they whisk Eva away for an EKG. Apparently this is something they just do.
Eva is experience significant dysregulation: sweats and chills alternating minute by minute. There is nausea and cramping (the cramping is intestina,l a brand new symptom). She is given IV hydration which improves how she is feeling enormously, IV Zofran which addresses the nausea.
The Nurse Practitioner (NP) working with Eva is the first ED person who seems really conversant with GJ tubes. He talks knowledgeably about choices for administering the Reglan.He gives Eva Reglan through an IV, all as a single bolus (push). This turns out to be a bad thing. Eva becomes even more miserable, shivering so much she is shaking the bed. She can’t put together sentences. The NP suspects an allergic reaction to the speed with which the Reglan was administered, and gives Eva IV Benadryl. Eva sleeps, still shivering at times.
The ED doc wants a CT scan of Eva’s stomach, intestines, etc. They don’t see anything relevant to how Eva is feeling, but Eva’s appendix is “prominent”. A surgical resident comes to find us to talk about Eva’s appendix. We are confused because no one has mentioned anything about Eva’s appendix or the CT scan results to us yet, and the surgical resident is talking like we came in because we thought there was a problem with Eva’s appendix. After about five minutes, we figure out what was going on (I know, I could have told this story so much better if I led you through the process as we experienced it, but I’m somewhat distracted by making sure Eva gets all her meds, has some nutrition and some hydration; clearly, I will never be submitting this blog post as a writing sample). The resident examines Eva, pokes around at her abdomen, says it seems unlikely the appendix is a problem, but the surgical attending will have to make that call, and he’s in surgery. She leaves. Eva’s stomach and intestines are really painful following being poked at by the resident (okay, palpated by the resident).
At 5:00 PM (Tuesday), Eva’s GI finally calls back (the call back we’ve been waiting on since Thursday morning, with the in-person visit with his associate scheduled for 9:30 AM Tuesday morning which he canceled). Unsurprisingly, it is not a particularly useful call, in part because Eva is beginning to feel a little more stable, in part because she is exhausted and dopey and not doing great communicating, and in part because we haven’t really figured out yet that there are times when I need to take over communication with medical providers when she’s feeling like this.
By 6:00 PM, we are beginning to feel like they have done all the stabilization they are likely to do, and we’re beginning to think about heading home. Unfortunately, we are still waiting on the surgical attending to take a look at Eva’s appendix situation, and he’s in surgery, and they really don’t want to send us home without that.
I’m getting dopey. I haven’t eaten since 8:30 that morning, and my low blood sugar is beginning to show. But this is a classy hospital, and when I ask where I can buy a sandwich, they point me around the corner to a supply of food available for patients and families in the ED.
Around 8:00 PM a different surgical resident comes to poke around at Eva’s appendix. This again results in pain. She also thinks the appendix is probably fine, but the attending still needs to sign off. The attending is still in surgery. He will look at the CT scan as soon as he gets out.
Around 10:00 PM the attending sends word that the appendix, while “prominent” on the CT scan, looks fine. We head home, exhausted. While we are home by 10:30, we both need time to wind down. Eva is ready for bed well before midnight. I’m not laying down to sleep until 2:00 AM.