This is again David, writing on Eva’s behalf.
We get Eva home from the hospital on Aug 21. She is deeply relieved to be home, but still in significant pain and with tons of nausea. She can’t use her feeding tube, and she is layering gabapentin and Tylenol and a bunch of other meds. She is spending most of the day in bed.
Within a day, I’ve taken over hooking and unhooking Eva from TPN (IV nutrition). It’s a process, and it’s a fussy process. The goal is to keep anything non-sterile from entering Eva’s PICC line. There is a lot of scrubbing things with alcohol wipes. There is a lot of precision taking poking needles into vials and removing vitamins. And it is more concentration and more standing than Eva can do.
Things aren’t getting better for Eva, and the doctors keep upping the gabapentin. Eva keeps taking increasing amounts of gabapentin because she is in pain and the doctors tell her to.
We go see a GI NP at Stanford about next steps. She prescribes the fluoroscopy and a visit to the pain clinic. We are able to schedule both appointments for a week out on Sept 11. We return home. Eva continues to feel well and truly awful. Pain such that she can’t concentrate on anything. Wooziness (like, she stands up and then has to sit down on the floor because she is afraid she will fall down). I begin to notice that while Eva feels better an hour or so after she takes Tylenol, the same doesn’t seem to be true of the gabapentin. I begin to wonder if the gabapentin is doing anything.
Eva makes it through an excruciating week before we head down to Stanford again for the next set of appointments. The pain clinic doctor is pretty great. She switches Eva from gabapentin to pregabalin (Lyrica). She has next steps in mind if this doesn’t adequately fix things. She refers Eva to a pain psychologist who will give her methods to help control the pain (that appointment will happen sometime in October). She refers Eva to a pain physical therapist, who will help Eva tolerate contact pain on her abdomen (maybe?).
We finish with her and it’s 11:00 AM. The fluoroscopy isn’t until 4:00 PM. Our home is 1.5 to 2 hours from Stanford Medical Centers. The good news is that there is a lovely courtyard with some padded chairs where we hang out until Eva’s TPN finishes, I disconnect her, and then we go off and find some lunch for me. We arrive at the fluoroscopy appointment outrageously early (2:45), which turns out okay because there is an insurance issue that takes 45 minutes for the check-in desk to resolve.
The fluoroscopy reveals nothing abnormal. There’s something unusual, but the radiologist can’t quite put her finger on it. It does cause Eva a whole bunch of pain because it involves flushing her tube with 120 ml of dye and she can’t even tolerate 30 ml of water.
We head home, Eva in excruciating pain and nausea.
The good news is that the pregabalin is working way better than the gabapentin. Eva is able to concentrate for brief periods. She is also venting a fair amount (which isn’t great for her hydration, but so far her labs seem okay).
Labs. A nurse shows up twice a week to change the dressing on Eva’s PICC line and change the extensions (little tubes that mean I’m not trying to do everything within an inch of Eva’s arm, but rather within a foot when I’m setting up the TPN or disconnecting it).
But Eva is still in a lot of pain, and there’s a lot of nausea.
We aren’t sure at the moment whether the GI has weighed in on next steps. She isn’t particularly communicative with either us or her staff. Eva thinks the current tube or the clips holding it in place or something are causing jejunal pain. We are hoping someone will decide to either pull the tube so the jejunum can heal or swap it or something. But in the mean time we wait.
And Eva is in pain and nauseated.
[This is Eva adding just one thing. I did get a response to my inquiries through the portal from a patient care coordinator to “Please continue to work with pain management to get the pain under control. Continue TPN for now. Follow with clinical nutrition. Once pain under better control can retry enteral feedings.” My next appointment with pain management is mid-October.]