Happy Passover to all who celebrate or take interest in such things. David and I had a lovely seder together and it was the best since The Before Times. We thought about trying to host a seder since we now have the outdoor space, but we do not have the furniture, the dishes are only partially unpacked (not for lack of effort–David has been an unpacking machine) and honestly, neither of us had the spoons to do anything big this year. But next year, watch out!
In other news, I am really liking our new primary care doctor. She is a concierge doc, so she doesn’t come cheap, but she gets it done. I was having some stoma pain (my stoma is the hole where the feeding tube goes into my stomach) and I asked her for some topical lidocaine ointment. She not only gave me a script, but she found me an ostomy clinic where nurses deal with nothing but stomas of all kinds.
I had my appointment at the ostomy clinic this week. The nurses were wonderful (I got two for the entire appointment) and they were excited to get to work with a relatively healthy patient. We had a good conversation about stoma care, they introduced me to some local resources (including an independent pharmacy) and they sent me on my way with a goodie bag.
Next week, David and I both have our extensive, two hour physicals with the new doctor. She has already ordered extensive lab work and David and I dutifully offered up our veins. I am not expecting any surprises, but it will be nice to talk to a doctor who is focusing on more than just my broken digestive tract.
I am continuing to increase my feed and I am now at 48ml per hour. Last year at this time I was at 54ml hour. I was able to read silly novels and knit. I am not there yet, but I am definitely seeing an increase in my energy. Even David commented that I turned a corner in the past week. It has been a long time coming. Next week it will have been a year since my hospitalization and the precipitous drop in my feed down to 25ml per hour. That is a year that I am glad to have left behind me.
Month: April 2024
Home, Sweet Home
This is the view from our living room window. Since we are at the top of a steep hill, we regularly see hawks and turkey vultures soaring just above the trees.
It has been waaaay too long since I posted last, but I have been flat out. I get small bursts of energy that I have been expending on being sociable or helping David with the unpacking and then collapsing in exhaustion again.
Nutritionally-speaking, I was stuck on 39ml of formula an hour because we had made the decision to pause the formula increases when the move started. But this is no ordinary move. This has been the extended version. I hadn’t increased my feed in over a month.
Fast forward to last week, when David and I discussed it and I decided that since my current state seems to be some kind of new status quo for me, there was no reason not to resume increasing my feed. I am on 43ml hour as I type this, and it seems to be working since I found the energy to write this post after sorting through a laundry basket full of unmatched socks, trying on some clothes and sorting through a mound of clean t-shirts and deciding what goes out of rotation, what comes in to rotation and the harshest category of all: which get put on the donation pile (bwahahahah).
Assuming today continues apace, then tomorrow morning I will increase to 44ml hour for the day. It is still taking me several days to acclimate to a single milliliter per hour increase. First day, the increase is just from when I get up at around 7:30am to flush* until my last flush shortly before bed time, at around 9:30 or 10. The second day I let the increase run for the full 20 hours of my feed. The third day is the same as the second day. It is a recovery day before the next assault on my extremely hypersensitive jejunum. Then day one again.
I have so much more that I would like to write about our cross-country move. But I doubt that I will have the energy to maintain both forwards and backwards momentum. I intend to keep my eyes looking forward into what is ahead of us. I also truly hope to have the energy to write posts more frequently now that we are actively in the settling in phase of the move.
* My time is defined by flushes. I have to flush 5 times a day. Those flushes are not evenly spaced out. None of those flushes can take place between 3pm and 7pm. Those are the hours that I am disconnected from my feed and my jejunum gets to completely rest. It is not all bad. Flushes give structure to what are usually completely unstructured days.