Month: September 2024

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.]

This is David writing on behalf of Eva who doesn’t really have the spoons for writing at the moment. 

If you’ve been following along on Facebook, most of this post is likely to be review, so feel free to skip (unless you want to review the hospital intensive side of things).

On July 18th, Eva went to Stanford to get her tube swapped out. This is a relatively routine procedure, though it does involve an endoscopy, and therefore sedation. But it’s something that should happen once or twice a year. The swap went fine, and we took off for a family vacation in western Massachusetts on July 25th. By July 26th, it was clear there was something wrong with the tube.

Eva was venting something that looked an awful lot like her formula through her G-tube (gastric-tube) (note, the formula goes in through the J-tube (jejunum-tube) which is downstream of the stomach (gastric)–nothing is supposed to flow in that direction). This suggests that the tube “flipped”. A “flipped” GJ-tube means that the J portion has curled up and is no longer in the jejunum (part of the small intestine) but is now in the stomach. The test for this is to squirt blue Gatorade into the J tube, if it comes out the G-tube, your tube is flipped. At a lovely Inn in Western Massachusetts, there was blue effluvia coming out of Eva’s G-tube on a Saturday afternoon.

The remedy for a flipped tube is replacement, which requires endoscopy and somewhat specialized GIs to do it. It’s not something most hospitals do on weekends. So bright and early Monday morning, we go into the emergency room in Springfield Mass., (the teaching hospital for UMass Amherst), and spend the day shuttling around between tests, an attempt to fix or replace the tube by interventional radiology (IR) (apparently the topography of Eva’s stoma, stomach and small intestine don’t allow for IR to do it), and finally, an endoscopy and a replaced tube. The GI commented that he had used to two clips, since the tube had been originally secured by one stitch. We go back to vacation with the rest of the family, Eva begins to feed for the first time in two days, and everything is fine. Until Wednesday, when things feel “wrong” again.

Eva is venting something that looks like formula again. And there is once again blue effluvia coming out of Eva’s G-tube. And so, we go back to the hospital. This time, they can’t get to it the same day (we didn’t arrive until 2:00 PM, so they admit Eva so they can slip her in whenever they get a chance. The following afternoon, they swap the tube again, and the GI tells me they used three clips to secure it. 

Eva is feeling pretty awful by this point, but she grits her teeth through the remaining few days of the trip until we fly back on Monday. By Wednesday, she is unable to feed at more than 15 ml/hour (her standard is 50), and we are seeing an NP at Stanford. The NP thinks Eva’s tube is flipped, and sends us to the ER for x-ray and maybe a fluoroscopy (we are dubious about the flipped tube part of things, but she’s seen more tubes than we have, so we go along with it). They do a CT scan, the tube isn’t flipped. They don’t know what to do for us, and send us home.

Thursday we touch base with our Primary Care Provider (PCP), and she suggests we come in Friday morning for IV hydration. We come in, Eva gets two liters of IV solution over 4 hours, and we all conclude that there is no way to keep Eva hydrated over the weekend, and besides bowel rest might be a good idea and fix everything. And the only way bowel rest works is in the hospital. So, with the consent of Eva’s GI at Stanford, we check her in to Novato Community Hospital for a few days. It is a small hospital, but we are only there for Eva to get IV hydration and maybe some pain management for a few days. Except . . . feeding through the tube isn’t getting easier, it’s getting harder. Eva can’t even tolerate 5 ml/hour (10% of what she had been getting).

By Wednesday of the following week, we are all clear that the bowel rest isn’t fixing anything quickly, and the IV hydration she is getting with some sugar in it is not a longer term solution. TPN (total parenteral nutrition) is the obvious answer. This is IV nutrition. This is a bigger deal because it requires a central line, in this case a PICC line. This is essentially a tube that runs inside a vein from your arm to a central vein right near the heart. It’s a little bit of a big deal because it is a route for things (like infections) to travel directly from outside the body to the heart. The docs at the hospital try to get ahold of Eva’s GI for a day and a half, but aren’t getting any response, and go ahead and schedule the PICC placement. It is placed, and Eva is getting real nutrition again.

We are still playing whack-a-mole with pain and nausea, but nutrition and hydration have been dealt with. Eva’s GI gets back to the hospitalists, and says TPN is a terrible idea and don’t do it–it always leads to infection. Sigh. We have actually heard this from another GI, and asking around, other people have heard it from their GIs. We don’t know where the GIs get their information, because it’s simply not true. When you tell other medical staff what the GIs said they look at you like you’re insane, because people can live on TPN for years without problems, and most of their patients have no problems. I can’t explain why GIs have such a different view of TPN than everyone else, but it seems to be a thing.

Over the course of most of another week, Eva is getting stabler. Her labs are looking more normal. By Monday the hospital is pretty ready to let us go. Except . . . to be sent home with TPN requires training. After all, while not as dangerous as the GIs seem to think, it is a route for infection, and does require a fair amount of caution and care. And a visit from a home health nurse your first day home. Who won’t be available until Saturday. 

Eva has been in the hospital for 10 days now. Wearing a mask all the time, except when she is sleeping when she is wearing a CPAP mask. She is so over this and so ready to go home. After a day, they are able to find a nurse who can come to the house on Thursday, so they plan for a Wednesday discharge. This means we get the first training session on Tuesday and the second on Wednesday. And Wednesday afternoon, August 21,  they let us go home. 

Which starts an entirely new stage of this saga, which I will relate in the next post.