I have been staring at my screen for a few minutes now, just trying to decide where to start. The last two weeks have been a lot. Actually, only the last week was eventful. The week before that was exactly what I needed, a relatively quiet week with the space for me to recover from the trickle feeds. Except that I was not recovering. If anything, the pain and nausea were getting worse. So of course, that is when our internet went out for two days.

But it really was this past week that was the bear. It started out pretty badly and then just got worse.

It has been a while since I have seen a dentist. Which is not like me at all. My mother has really bad gum disease and although I take after my father in most ways, including my good teeth and gums, it has meant that I have always known the importance of good dentistry. Therefore it has always been a priority for me. But when one is starving, priorities shift. And then there was Covid and hospitalizations and enteral feeding and TPN and suddenly I find myself having gone several years without seeing a dentist.

Covid remains a factor for me. David and I are extremely careful because Covid is a vascular disease and messes with one’s immune system and I just don’t need that on top of everything else. While I can mask at most medical appointments, one really does have to take the mask off for dentistry.

There are all sorts of strategies to get relatively safe dentistry, one being to get scheduled as the first appointment of the day on a Monday morning. But that has been my home nurses slot for 2 years, so that seemed less than ideal for me. The other strategies seemed even harder to coordinate so I threw my hands up in frustration. Then someone suggested that there are mobile dentists that see homebound patients. They do cleanings, take X-rays and can fill cavities. That seemed like a much better match.

I found one in Marin County, scheduled an appointment for this past Monday and was given a window of time and the name of my hygienist. Then absolute crickets. I finally called 3/4 of the way through my arrival window. First I called the scheduler. She said that my appointment did’t ring a bell and asked if I knew the name of my hygienist. Since she had helpfully included it in one of her emails to me, I did. She gave me the hygienist’s cell number and I gave the hygienist a call.

Seems she had no idea about my appointment either. I helpfully forwarded her the entire chain of emails verifying the appointment. She didn’t handle the screw up graciously, but she did reschedule me for July 3rd. At this point, I just want it done so hopefully everything goes ok. I have maintained my oral hygiene throughout and can’t vomit, but I have had years of malnutrition and don’t know what that has done to my bone density. I am just hoping for the best at this point.

Pragmatically, it is probably ok that I didn’t have a dentistry visit this past week. Instead I had myself another hospital adventure. Those following along on Facebook might already know this, but there will likely be a bit more detail here.

First some necessary background. I have had my home nurse, Jennifer, coming at least once weekly for almost two years now. She takes my vitals every week so I have a really good sense of my baseline. My blood oxygen saturation is always 99-100 (sorry Sara).

In my last post, I mentioned that I was taking a break from my enteral trickle feed until the pain in my gut settled down enough that my pain was back at a 6/10 (my baseline is a 5/10, so a 6 is actually pretty good for me). However, the pain in my gut was getting progressively worse, not better.

On Tuesday morning, I was feeling particularly bad. I was shaky and in a lot of pain. I am always at risk for sepsis because of my PICC line and one of the steps of a sepsis check is heart rate. So I slipped on my handy dandy pulse oximeter and while my heart rate was only slightly elevated, my O2 sat had dropped to 95. I have never seen it that low.

I am absolutely clear that 95 is a great number and even some healthy people would love to have it. The only reason it caught my attention was because it was such a big change from my incredibly consistent narrow baseline. I texted my nurse and she said that if I didn’t feel well then I should absolutely go to the ER. But, since they would not understand that this was a significant change for me (italics mine), I would likely be triaged to the bottom of the list and would have a long wait ahead of me.

We didn’t go to the ER at that point, but I kept feeling worse and worse until I got to a point where my pain was too much for me to even bear the trip to the hospital. Which is, of course, when one has to go to the hospital. We pulled out the stops getting my pain down enough for me to tolerate to the trip to the ER and headed in.

Since we went in for severe abdominal pain, I am not sure either David nor I even mentioned 95 oxygen sat. The first order was for a CT scan to make sure there were no blockages. This is standard for coming in with severe abdominal pain. And this is where things got interesting.

The abdominal scan caught the bottom of my lungs where multiple pulmonary emboli were found. That earned me a second CT scan of my heart and lungs as well as a full heart and blood clot work up, which included ultrasounds of my extremities. They also found a blood clot behind my right knee, but apparently that one isn’t responsible for the clots in my lungs.

I was admitted to the cardiac unit and they immediately started me on heparin. What they didn’t do for over 24 hours was give me any nutrition or hydration. The delayed nutrition is because it always takes the pharmacy a day to compound TPN for me. We always offer to just use my TPN from home and they always turn us down. There is a process in place for patients to have the hospital nurses dispense medications that are not stocked in the hospital’s pharmacy. We used that very process to bring in my Journavx during this admission. I don’t understand why TPN is different. And it is not just this hospital. My fellow TPN dependent patients have this same issue all over the US.

Unsurprisingly after no nutrition for so long, my electrolytes ended up a complete mess. I earned myself two infusions of potassium, which is super caustic. The last time I needed IV potassium, it was done through an IV and it burnt my skin so badly it peeled and took months to recover. This time it went through my PICC line, which was easier, but still uncomfortable.

Anyway, eventually David prevailed upon the nurses to beg the doctor to prescribe some saline for hydration. But the doctor ordered it at such a low rate that it was symbolic. David very nicely begged the nurse to get it set at a meaningful rate. She complied, but even so, it still took me days to recover from the dehydration from that first 24 hours.

After triage, I was given a single dose of toradol (an IV NSAID) for pain before my first CT scan, but after that, the only new intervention I got at the hospital were blood thinners (first IV heparin and then oral Eliquis) and yet my pain has dropped back down to a 6. Apparently those blood clots were indirectly making my pain worse.

What has not improved through this whole adventure is my nausea. Zofran used to be a magic bullet that just cut through the nausea. And once I was able to get IV Zofran at home, I thought it would be magical. But it is barely holding me now.

In the hospital I trialed Haldol, which is an antipsychotic med that is sometimes used to manage nausea. It made me manic and uncomfortable in my own skin. They gave me Benadryl, which calmed me down and at least allowed me to sleep.

There was one night in the hospital where the nausea was so bad that I even asked for compazine, another antipsychotic that I have used in the past for nausea. It used to work even better than Zofran. Until it gave me tremors and I went off of it. But that night in the hospital when I was feeling so nauseated that I needed the relief. I asked for a dose of compazine tremors be damned. Turns out the compazine made me tachycardic. I again asked for some Benadryl and eventually was able to fall asleep.

Now that I am home, the nausea is still bad. It is limiting my ability to read, I am still not able to craft and I am pushing myself past tolerable right now because I just want to get this post done. So I am going to try to wind this up.

At home, I am retrying ciproheptadine, which is a first generation antihistamine which is now used for nausea management. I have trialled it before, but it wasn’t effective. But there are so few meds to manage nausea, GI pain and motility that all one can really do is try the same meds over and over hoping that at some point one of them will work. All I had to do to retrial ciproheptadine was just pull the bottle out of my “meds I have tried and failed to be effective for me” bag that I keep for just this type of purpose. I did also update my motility GI that I was retrialing it. So far, it hasn’t done anything for me, but I will probably give it a full week before I give up on it again.

I do have a post admission visit scheduled on June 25th with one of my motility GI’s Nurse Practitioners. This is not one that I have met before, but based on her predecessors, I am not going to hold my breath that she will have any new ideas for nausea management.

I have given myself a few days grace to recover from the hospitalization and dehydration before I restart trickle hydration. But that time is quickly coming to an end. I am hoping to restart trickle hydration at a very low rate tomorrow or Tuesday. Welcome back Quadruple Tube Girl!