kayray.org

Agan, ok for a few hours in the morning. Maybe three today. Did a little sewing on a prototype washable Swiffer pad. Not happy yet but it’s a start. Then CRASHED.

Finished Breaking Bad. (Again)

Managed to strip the guest bed and wash the bedding. It’s sitting in the dryer waiting for tomorrow. I also cleaned the Roomba and took pity on it and ordered it some new rollers and filters and edge-brushes. Poor thing is nearly two years old and is using its original rollers, and has only had one filter change. Maybe it will be less confused by its job with some new parts. Today I told it to do the guest room, so it trucked on down the hall to the door, turned around, went back to its base, and cheerfully told me it had finished. Poor little confused robot.

I lasted a little longer before Crash Time today.

We have an unfinished bathroom connected to the master bedroom, and Dave has decided to give it a functional toilet before our guests arrive on Saturday! I’m so excited! We have a second bathroom downstairs (and a third one downstairs and outside, accessible to the workshop) but neither of us are fond of stairs so this will make life much easier. Plus this new bathroom will have a Toto toilet like our main bathroom. It has a heated seat and washes your butt with a stream of clean warm water. It’s heavenly. Dave misses the Toto when he goes out of town and I missed it when I was in the hospital. And that is another reason we don’t love using the downstairs bathroom. No Toto yet :D

Started cleaning the sewing/guest room for houseguests next weekend. Crashed hard after half an hour, had to nap the rest of the day. Frustrating. Need to be patient.

Eating and resting, resting and eating.

I did manage to sit up for a while and catch up on my Botanical Stitch-Along.

Thirteen hexes, thirteen weeks into the year. It’s fun stitching a new one each week.

Woke up too early because I was hungry and excited to see my Lulu, who planned a quick visit today! I took a good bath and washed my hair properly. Put on clean fresh clothes. So pleasant to not be in the hospital anymore.

Lulu and Henry showed up and Lulu got into bed with me, resourcefully bringing our shower seat in from the bathroom to help herself climb into my very tall bed. We had a good cuddle and I read her two stories, and then she brushed my hair and decorated me with red geranium petals.

I was getting my hair done in a salon on a long train journey.

Henry did chores, wonderful boy. He took out trash and recycling, helped Dave move stuff, and swept and swiffered the kitchen and it’s SO CLEAN! Ugh I hate living in a dirty house but we needed to postpone the cleaners this month.

Small girl wore me out entirely. The visit was not short enough, alas, and I am at max sensory input capacity.

Ate and rested, rested and ate.

Felt ok again when I woke up this morning. Gravity back to normal. Got up, started black bean soup in crock pot, ate breakfast sitting at the table and chatting with Dave, then crashed hard and went back to bed and fell asleep. Slept an hour or two, and by the time I woke up the soup was done! Adding a spoonful of baking soda to a pot of beans makes them cook FAST and lordy did they end up soft and creamy and delicious!

Remainder of day I napped and ate and napped and ate, and continued my giant rewatch of Breaking Bad.

Dave brought me a little pizza from the Friday night Pizza Bus so I’m gonna eat a slice now and then fall asleep.

Exhausted. Jupiter gravity all day. Tomorrow will be better.

Too exhausted to write

Home! Home home home home home.

Had one more huge dose (120mg) of IV lasix this morning and then Dave picked me up in the afternoon when I had finished peeing. Picked up Burgerville milkshakes and fries on the way home. Took low-effort bath — didn’t bother to unbraid hair, just soaked and shampooed my scalp and scrubbed my skin. Gray bathwater lol.

Have been in bed since then. Did some embroidery, continued my binge rewatch of “Breaking Bad: A Series of Increasingly Bad Decisions” (this is my own private domicile and i will not be harassed), ate blueberries and cottage cheese. I have a bowl of sliced green apples and goat cheese to work on next.

I’m eating like it’s going out of style. Woke up ravenous in the middle of the night and had to ring for my nurse to bring snacks. He said it’s because I’m healing.

My final hospital weight, after losing multiple liters of extra fluid, was only 104 lbs. I thought I weighed 108-110. All fluid. And there’s still more in me to get rid of. So it’s back to square 2. (At least I probably have a real weight of more than 98)

Good morning. I’m hungry, waiting for breakfast to arrive. Yesterday’s menu exploration went very well — a little cheese pizza for lunch was fresh and very tasty, and for dinner I had grilled salmon with roasted red potatoes and a side of spinach. I opted for spinach because the fish came with a lemon wedge and lemon is perfect with spinach. Now we’re not talking a $30 restaurant entrée here, but it was fresh, well-cooked, and tasty! I should have ordered more veggies because I was hungry in the night.

Also my damned MALE night nurse woke me up several times by opening the squeaky door to check on me, despite my doctors’ Do Not Disturb orders, and my plea at bedtime not to. Man did I chew him out when I caught him. I emphasize “male” because guess who didn’t think they knew better than my doctors? Guess who was respectful of my need for uninterrupted sleep? Guess who prevented phlebotomy from waking me up early for labs? Every single female night nurse, that’s who.

Ordinarily the guys are just as awesome as the women. Aaron is just a dud. Hope I don’t have him again tonight.

Dave visited me yesterday and brought clean clothes YAY! Omg the smell of clean laundry. I was so wiped out yesterday that I thought I’d need to send him home right away, but I had forgotten that he doesn’t tire me out like other people. He is restful for this introvert to be near, and it made me feel better to be with him. That’s why he’s my person! Silly me. He stayed for a few hours and we had lots of good time together. He’s not a prolific texter and I’d rather die than talk on the phone, so we had a lot of catching up to do. Oh it was good to see his darling round face again.

I had a good long sleep last night and am starting to feel more like myself. I still have tons of fluid around lungs and belly, so I’m still puffy and short of breath, but it’s getting better little by little. I was able to eat two 4oz bowls of cream of wheat for breakfast, all at once! A couple days ago I couldn’t eat more than two bites at a time. My belly is still distended and gross (fluid) but we’ve flushed out enough that my stomach has a bit more room.

Today I can imagine feeling well enough to go home someday soon. I’ve been sitting up all morning. I did all my breathing exercises and a whole round of leg exercises!! So weak, have lost all that progress. Sigh.

Working on weaning down the supplemental oxygen. We cranked it down from 5 lpm to 4.5 this morning and I’m doing ok. Will try for 4 later.

Last night’s dinner was so good. I ordered the mac and cheese, with my fingers crossed… and it was great! Not Kraft, not orange, not mushy. Good flavor, good al dente texture. Sprinkle of crunchy breadcrumbs on top. I might risk the pizza for lunch… the only food I’ve had here that sucked was pancakes. Inedible disks of rubber.

And of course the cheesecake. I don’t think I’ve mentioned the cheesecake. I don’t like baked cheesecake, and I don’t like the kind with whipped cream folded in. They have the GOOD cheesecake here, chilled, tangy, not too sweet. I went researching recipes and I think the secret might be cream cheese plus sour cream plus gelatin. I have a recipe to try when I get home. I’ve been having a slice with every lunch and dinner. Drool. It makes such a big difference to have genuinely appetizing food to look forward to!

They have a big selection of steamed veggies too, and you can order exactly the ones you want and they PILE them on a plate! Broccoli, spinach, kale, carrots, green beans, peas, corn. I usually order three kinds with lunch and get a mountain of veggies to work my way through all afternoon. And they have real mashed potatoes. Not instant. There are little lumps of potato, and they’re using something like Yukon Gold or Rose, I think. There’s that touch of sweetness you don’t get with russets.

For breakfast I always get cream of wheat and a fruit and yogurt parfait, which is beautiful strawberries with thick yogurt and excellent granola, on the side so it doesn’t get mushy.

I think I’m getting hungry, heheh.

Forgot to say i have some mild Hospital Delirium, which is caused by sleep deprivation, lack of natural light, messed up circadian rhythm etc. First night I was in regular room after five days ICU i woke up middle of night no idea who I was or where I was. Utterly terrifying, but it passed. The freakish exhaustion, brain fog, and Jupiter gravity was part of it too. Yesterday it was gone, but Dr Sam told me it could come back in waves and not to worry if it does.

Brain fog and Jupiter gravity are back today. It’s ok. It’ll pass.

Belly still distended but on the mend. Was able to eat entire breakfast of cream o wheat, strawberries, yogurt, granola over 45 minutes. Still flushing out liters of extra fluid.

Turns out it wasn’t Constipation From Hell. I had a little constipation, but the main problem was actually buckets of fluid retention in my abdomen. BUCKETS. I’m on big powerful doses of diuretics now and have been peeing liters more fluid than I take in. Literally. Today I peed 2 liters more than I drank. I mean, they do all the math so if I drink a liter and pee three liters it’s 2 liters more than I drank. I’m tired. Hope that makes sense. Anyhoo. Belly pressure is easing little by little. Exhaustion is down to regular hospital exhaustion levels. Listened to podcasts and audiobooks all day. Heart rhythm good, bp good, o2 good at 5 lpm.

According to my sweet Night Nurse Emma, I have a great attitude and it’s a pleasure to take care of me. :)

Lay in my sunny window for a long time today.

Moved out of ICU to normal room midnight last night. No monitors, no wakeups, quiet as a church.

Still feeling rotten. Bad belly. Frustrating. Such exhaustion. Feels like I’m on Jupiter. Too much effort to write .

Yesterday was so awful, just so awful in so many ways. Besides EVERYTHING ELSE I’ve had Constipation From Hell since Monday. I blame severe dehydration caused by a combo of diuretics and not being allowed to drink anything for… 12? 18? hours. Not sure how long it was but I was so parched I could scarcely speak.

Also on top of THAT we tried titrating up my Remodulin dose, which always causes a couple weeks of severe side effects. So those started up last night and were so bad I pled to go back to my regular dose, which they ok’d. We’ll try again when I’ve been home a while and my general discomfort is less severe.

Anyway. Today has been better. Constipation is easing. Allowed to eat and drink at will. Heart behaving. Lungs less janky. I’m off the horrible high-flow oxygen machine and back to a regular nasal cannula, and I’m only needing 7 lpm. At home I use 3-4 lpm.

And best of all a lovely doc said they could unhook all the monitors and even the bp cuff and pulse/ox. See, last night I had kind of an Episode of Awful (see: titration) and I summoned them immediately to tell them I needed more o2 and my heart was racing. So I think they trust that I will tell them if things go wrong.

He said something like, when they watch the numbers too closely in an unusual patient like me, they might try to fix stuff that isn’t broken because what’s normal for me is abnormal for everyone else.

This is the BEST HOSPITAL. Staff is uniformly excellent. They let me wear my own (filthy) clothing. They didn’t confiscate my Bag of Meds. The food is pretty darn great. This was the first day I was able to eat breakfast and I had cream of wheat and a fruit-yogurt-granola parfait. So fresh, and everything is obviously made to order.

I’m supposed to eat small bites of lots of different foods to help my poor belly so last night I asked for two slices of multigrain bread, two slices of jack cheese, and a side each of spinach, peas, and rice. Nothing frozen, all high-quality. Not disgusting grocery store bread. I could only eat a few bites of each thing but I kept working on it all night long.

It’s frustrating that I could move around if I wanted, but I’m too exhausted to do anything but lie here and nap. I did manage some gentle stretches this morning. That’s better than nothing.

Time has no meaning. Still alive. Still in ICU. Still miserable.

Too tired to make sense

Electric cardioversion seems to have fixed my heart rhythm?

Didn’t sleep last night. Up to pee every hour and if I did fall asleep my o2 fell and the monitors beeped and woke me up. Gah!

Spent most of the day waiting, as one does at the hospital. No food, and worse, no water all day. After much discussion we decided to try to fix my atrial flutter with stronger meds first (ibutilide) then shock tomorrow if it doesn’t work. One of the potential side effects of ibutilide is cardiac arrest, lol, so I had a whole squad of docs and nurses standing around ready to intervene during the 15-minute IV infusion.

They started me on a half-dose because I’m little. It went fine and I definitely started to feel better, but my EKG was inconclusive so, after waiting around for 1000 YEARS, we tried against with the other half. Still feeling better, EKG still inconclusive.

So now I finally finally finally get to eat and drink. They’ll let me try to sleep tonight and reevaluate in the morning. No food or drink after midnight again so I’m hoping to eat at least two dinners tonight. Dinner number one should arrive in less than an hour: chicken soup, grilled cheese with tomatoes on sourdough, three little helpings of pineapple, and two little cranberry juices. (You’re allowed 7 things per meal — one entree and six little sides and extras)

Hoping to order Second Dinner when First Dinner arrives, so I can order before I get full. Probably another cold sandwich because it’ll still taste good if I save it to eat at the last minute. Or PIZZA.

Can you tell how hungry I am?

I’m trying not to drink too much water because I don’t want to pee all night again.

What’s with randos texting “hi”? What on earth can they possibly hope to gain? Go away.

Hello from the OHSU Cardiac ICU. My symptoms didn’t improve overnight so I asked Dave to drive me to OHSU early this morning. They’ve run lots of tests but nothing unusual is popping up so the theory is there’s just too much fluid in me and it’s stressing my heart. So it’s diuretics and endless peeing for me, unless they can think up a better strategy. Frankly, they seem perplexed and have asked me if I have any theories. Lol.

I was in the noisy bustling ED till afternoon but now I’m in a spacious, quiet, private ICU room with a huge window.

I didn’t eat or drink anything this morning so by afternoon I was just famished. It took forever to get permission to eat, then to order food, then to have it delivered — and right then they moved me to the ICU, with a CT scan on the way, and then there was all the palaver of getting me established with my ICU care team etc. My sandwich, green salad, cranberry juice, and three servings of fresh pineapple were just staring at me! But after like an HOUR I finally got a chance to eat and it was so delicious! Just look at this beautiful sandwich. There’s hummus and cheese on it, too, and I got packets of mayo and mustard.

So tired. I expect to be here for a couple of days.

Woke up tired. Stayed in bed all day. Heart a little too fast, oxygen a little too low. Not ambulance numbers, but uncomfortable. Hope a night of sleep will fix me.