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.