Holding steady

Well it was definitely a FRA-lichen Chanukah (thank you Shira Rubin for the wonderful wordplay)!

It is sooo good to be home! I’m still not getting excessive amounts of sleep due to coughing and needing to run an IV every 8 hours, but I am far more rested than I was in the hospital. And of course the food situation is greatly improved! Week #2 of the Fancy Restricted Antibiotic, however, hasn’t been quite as dramatic as I would’ve liked, and medically I’m basically at the same place as I was when they discharged me. I’m still dealing with a fair amount of congestion and tightness. My oxygen levels mostly hold steady when I’m sitting still, but slide with the slightest exertion. Unfortunately for me, they only slide to juuuust over the cutoff point for supplemental oxygen. Which means it’s difficult for me to manage basic daily living tasks, but I also don’t qualify for the in-home supplemental oxygen that would make things easier. It’s a bit of a catch-22: I know I’m deconditioned and need to exercise, but I don’t have the supplemental oxygen that would make exercise easier. I do have a possible lead on that issue though, and it may be resolved within the next couple days… Stay tuned for further developments!

Another catch-22 is that for the last week I’ve been having sporadic episodes of coughing up small amounts of blood. The usual response to that is to hold some of my more irritating treatments to allow the wound to heal – but those treatments are also clearing the congestion out of my chest. Clearing congestion helps reduce infection, which helps reduce the risk of bleeding. So we’re walking a delicate balance between not provoking a bigger bleed – because G-d knows I don’t need any more drama in my life! – and not undoing the progress we’ve made in clearing things out. Oh, and all my bleeds in the last week have followed more significant exertion, since an elevated heart rate puts more pressure on the blood vessels and makes it more likely that any weak spots could give way. Apparently I need to just be very chill for the next however long until things finish healing… which doesn’t exactly help with the whole trying to exercise and not become even more deconditioned thing.

Of course I can’t just be boring and straightforward about things, everything has to be complicated. I’m so high maintenance.

My follow-up appointment is on Wednesday, and I fully expect at least another week of treatment, possibly with yet another antibiotic. My lungs are being so very stubborn this time around (which I guess shouldn’t be a surprise, they are MY lungs after all)! I’m super curious to see what my pulmonary function testing looks like. I know I’ve improved from that dismal 45% a month ago, but I also know I’m not back to my usual 60%. The question is how much progress have I managed, and how much more might I be able to accomplish.

So, not exactly the glowing update I would have liked to share, but also not terrible. Holding steady is definitely better than going down! And being home is definitely, DEFINITELY better than being in the hospital!!

Freedom!

A full 3 weeks later, I am FINALLY home!!! Since I spent every last day of Chanukah in the hospital last year, I just now lit my menorah for the first time in 2 years. I don’t think I’ve ever said a shehecheyanu with that much kavanna! I am so grateful to finally be home and to have the chance to celebrate even part of Chanukah this year!

Almost there!

B”H I think I have FINALLY turned the corner!

The last couple days I’ve been noticeably less dependent on supplemental oxygen. I’ve mostly been off it while at rest, and haven’t needed as much while walking around. Overall I’m breathing and moving better and have more energy. It seems that the Fancy Restricted Antibiotic is doing the trick!

Today my doctor gave me the best Chanukah present ever by finally talking about DISCHARGE! I still need more treatment, but thankfully I’ve gotten to the point where I don’t need to be in the hospital for it. The plan is to get me back on home IV antibiotics and fluids so I can finish up the Fancy Restricted Antibiotic in the comfort of my own home. I’ll also still need to make sure to do LOTS of extra nebulizers and chest PT to keep working on clearing out the remaining chest congestion. But it’s so much easier to do all that at home instead of in a hospital bed!

The question now is how I end up feeling tomorrow and how long it takes to set up all the home care services. If all goes well, I should hopefully be going home within the next couple days!

I am SO grateful that I will be able to have at least part of Chanukah at home and finally get to light my menorah! Turns out the Fancy Restricted Antibiotic really was my Chanukah miracle!

Chanukah surprise!

My team from the outpatient clinic brought me Chanukah presents! They felt bad that I'm stuck in the hospital for Chanukah for the second year in a row. It was so super sweet and totally made my day!

Chanukah oh Chanukah

Chanukah in the hospital 2.0! Katherine went on a scavenger hunt and found the decorations I saved from last year so she and Rivka Sara could deck out my hospital room. I think my first night of Chanukah crew did a great job! I've already gotten comments on how festive my room is and I'm anticipating plenty more to come. Then later on, Rivka Sara and Eli video chatted me so I could say amen to their bracha and be part of a real menorah lighting. So all in all, I'd say my first night went pretty well considering the circumstances! Chag sameach!!

Lekavod Shabbos

Most Sabbath-observant Jews do something special each week lekavod Shabbos, to give honor to Shabbos. Dressing in nicer clothing, having fancier food, setting a beautiful table… anything to show that Shabbos is special and different from the rest of the week. I’m pretty limited here in the hospital, but I was feeling well enough this week that I wanted to do something more than just plugging in my little electric “candle” and eating dinner. So about an hour before candle lighting I started puttering around my hospital room, throwing out trash and organizing my belongings. I didn’t have the energy to deal with showering and getting dressed up, but I cleaned up with a washcloth and changed into a fresh pair of pajamas.

It may not seem like much, but right now that was a decent amount of exertion for me. As I started panting, I found myself murmuring between breaths “lekavod Shabbos… lekavod Shabbos…” This effort is for Shabbos. This oxygen is for Shabbos. I’m trying, Hashem. I may not be able to do much right now, and I don’t know why You’re making this so hard, but I’m still here and I’m still doing what I can.

Sometimes life limits us and it feels like we can’t do enough. But really, it doesn’t necessarily matter how big or beautiful the outcome is. What matters most is that we keep making the effort.

It takes a village

I have to say, I love my community! Shout out to the Adlers, Bienenfelds, Junis, and Goldmans for making sure I had plenty of delicious home cooked food for Shabbos, and to the Becks for helping bring some of it to Katherine so she didn't have to make too many trips! Now that I'm able to eat again, having real food available DEFINITELY enhanced my Shabbos. It was such a communal effort to ensure I was taken care of, and I feel very loved!