Honestly, we really don't care which doctor has the biggest dick, just call the damn insurance company & approve her for Connerton!

I Want to Go Home. Or Hit Someone.

So at what point was the case worker going to tell us that they had her ready to go to Kindred in Tampa? Her lung doctor wants her to go to Connerton, we want her to go to Connerton, Bayonet Point automatically started paperwork for Kindred. Kindred is over 35 miles away; I can't expect dad to make a trip like that more than once or twice a week at the most. We are trying to get aunt's primary physician to make the call that will make the insurance company approve Connerton, but she (the doctor) is being a piss and doesn't think her phone call will matter. I really really want to hurt someone, get them to look at my aunt, not just her insurance ID number.

But it really frosts me that Bayonet Point Never. Even. Called. to tell us they were planning to send her to Kindred. I am so angry right now.

Red Tape

Supposedly, aunt's lung surgeon (Dr. DiSantis) is supposed to call her primary care physician (Dr. Jain) to start the ball rolling on getting her moved to UCH/Connerton. Dr. Jain not only has to agree with Dr. DiSantis, but she then has to call WellCare and tell them that the Connerton LTACH facility is the best place for aunt I. Connerton then has to get a letter of agreement in place with WellCare.

Dr. DiSantis was saying he thought she could move as soon as Tuesday (they want to do it the day after a dialysis treatment), but I wonder if he really grounded that in the reality of bureaucracy and red tape.

I spoke with the nurse liaison at Connerton, and she said that they're ready for her, as soon as all the ducks get lined up. Even with the pushing from the doctors' side and the pulling from Connerton's side, I'm thinking Thursday may be more likely. Tuesday or Thursday, though, I'm still a little anxious about the move. I hope they keep her sedated enough to not freak out during the trip. I plan to be there when she arrives at Connerton and will say at least the first night, maybe the second night, and possibly the third, too.

Reinforcement

Thank you, Northside Knitter, for sharing your comments about your dad's progress after his tumble. I was suspecting that something exactly like what you described may happen, so I am planning to stay in the pull-out bed in her room for the first 2 days or so. She's also occasionally disoriented already, so moving her may just make it worse, at least at first. We are hoping for the same scenario you describe, a dip then slow but steady progress. (PS - can you send your normal email to me via Rav PM? I don't have your email address and many times I want to thank you privately for your comments, so I can't!)

Aunt was very tired this morning; they had just cleaned her up, rearranged her, turned down the ventilator, so she opened her eyes and talked to me for a little bit, but quickly nodded out again. The nurse said she hasn't been sleeping soundly, so when she (aunt) was in a good sleep this morning, she (nurse) let her go until 10:00, when she (aunt) woke up on her own. Time to leave Starbucks now and head over there for the afternoon visit.

One Day at a Time

Aunt seemed awake and alert at this morning's visit... except for the part where she asked if we had ever known anyone who "this had happened to." Like lung surgery, I asked? No, she said, someone who just lost their ability to talk all of a sudden. Um. We know why you can't talk, Aunt Irene; it's got to do with that tube in your neck. Very weird. Otherwise, she seemed perfectly with it.

Dad and Ann are visiting her for the afternoon visit, and I'll do the evening session so they can have their normal Saturday night date. In between, dad's making crock-pot ribs and sauerkraut. Mmmm...

Dad & I talked about moving aunt to UCH/Connerton and decided we're okay with it. We'll find out from the doc over the weekend what timeframe we're looking at.

Interesting Development

So last night, Aunt I's doctor called. Said she seemed to have hit a plateau where the Bayonet Point ICU had done just about all it could do for her, that it was time to start thinking about moving her to another facility.

Now, we have been waiting to hear from him that she had stabilized enough to be moved to a rehab facility. Note the difference between "stabilized" and "plateau." I get a definite negative connotation from "plateau," not so much from "stablized." The doctor then gave us the name of a place where they would be able to take her; as a matter of fact, he said that the nurse liaison had already checked on Aunt I's situation and determined she would be a "good candidate" for that facility.

Three problems... 1. I went off the deep end emotionally. This sounded like a bad thing. 2. Aunt I's insurance is notoriously crappy and has a reputation for not playing well with others. We wondered if we should even bother checking the new place out until we find out if they have a contract with her insurance. 3. The new place, UCH at Connerton, is twice as far away as where she is now. If she moved there, visiting her would be a real problem for my dad, as well as anyone else who wanted to stop in to see her.

But, I called the nurse liaison to talk things over. First, she said that reaching a plateau is not uncommon in these cases. The ICU can take her so far, but they have no facilities for taking her further. Second, she said they've worked with WellCare (aunt's insurance) and as long as aunt's primary MD says Connerton is her facility of choice, they have been able to work out a 'letter of understanding' for insurance purposes. Third, Connerton's primary patient base is elderly; they know that travel there is problematic. Plus, because they are highly specialized, they get patients from far distances. So, they have a "family van" that you can book to be taken to and from the hospital for visits... even daily, if you want. Fourthly... and fifthly... and sixthly... Connerton is brand new. They have many available beds and staff who can work closely with patients. Their van driver isn't too busy right now. They have family rooms where family can stay overnight if they want. It's a more comfy facility, but with all the bells and whistles needed to take care of patients needing acute care. Most importantly, she said they can do the dialysis, and they specialize in weaning hard-to-wean patients off the ventilator. She said that she has no idea how Aunt I would handle it, but their average patient stay is 25 days.

After talking with her, I'm inclined to recommend to my dad that we do it. It will be a struggle for a while, but if it helps her get better, then we should do it. I feel a bit better, and will talk it over with dad once I get to his house later.

Can anyone say emotional roller coaster?

Getting Older

So I know that I'm creakier now than when I was, oh, let's say 40. Why, then, do I think that at 60 I won't be even more creaky? Especially since I'm not doing ANYTHING to help my body achieve a non-creaky state? Someone gonna sprinkle magic dust on me, I suppose, and my ankles/knees/hips/back/shoulders/neck will be fine.

Fine. Whatever. My brain is still somewhere in the 28 range (although some may argue it's closer to 8 than 28...).

Things

What I like about here. Carvel. Sunsets. Lightning. That my dad and aunt are here.

What I hate about here: Just about everything else. Highway 19. Humidity. The drivers. The curbs (there aren't many). The shoulders on the roads (there aren't any). Sidewalks (rust-colored and cracked). The attitudes of people, natives and transplants both. The weather. That Kelly's not here. That it's not home.

Homesickness is really starting to kick in now. I treated myself to a facial and pedicure at a real spa on Monday, trying to pretend I was in a California state of mind. It worked while I was there, but wore off as soon as I got in the car and had to deal with idiot drivers again. This is going to sound so selfish, but Aunt Irene, please get better. I need to go home but can't leave until you're safely settled into a rehab facility.

Important note: the Mentos fountain does not work well with a small bottle of diet Pepsi. Small bottle just sort of burbles up.

All Chair, All the Time

She was in the chair again when I visited this morning and had been there since 8:00 AM. She's cranky when she's in it because it makes her tired and probably isn't as comfortable as the bed, but we keep telling her that age-old statement that parents tell kids: "Be quiet, it's good for you." (Well not quite like that... we sugar-coat it a little more.)

When dad and I went to afternoon session, she had just been put back into bed, so she was there for about 8 hours. A little more chipper, a little more awake.

I had a good conversation with today's nurse earlier; she was very helpful in letting me know how she's really doing. Hard to get the correct answer out of aunt I since the drugs often speak more than her rational brain.

We'll go back again tonight, then tomorrow is dialysis day when we don't visit. Time to get the oil changed in her car.

A Chair, A Chair, My Kingdom for a Chair!

She was in the chair and off the ventilator when we visited at the morning session today! Of course, she was tired, cranky, and wanted to be back in bed and put on the ventilator... but they had her in the chair. Apparently they had her sitting straight up, but she couldn't tolerate that for very long, so let her recline to almost bed-level. Still, a big step.

Her big question for today: Had we 'investigated' the hospital? Hm. Nothing to investigate, dear; it's where the doctor did the surgery and where he wanted you to be. We both agreed, though, that today's respiratory therapist left a lot to be desired. She had also been complaining that no one told her what was going on (well, they do tell her, but she forgets), when today's therapist came in. Without saying anything about what he was doing, he started poking around her, looking for something. I asked what he was looking for and what he was doing, and he finally said he was checking her blood gasses level. Yeah; great bedside manner. Think I'll mention that to one of the 2 nurses that we really like when we see them again.

Dad went to afternoon visit, because I had some work to do. He said she was about the same as the morning. Tired, but back in bed and on the ventilator again. Didn't mention if she was asking any more 'interesting' questions. I'll take the evening shift so dad can have a 'date' with his girlfriend (who's making dinner for us both, as a matter of fact).

In yarny news, I went to the other LYS for this part of the world. Fiber Art is in Odessa, Florida, on Gunn Highway, and seriously, knitters - if you're within 50 miles of this place, stop in. The first room on the right is full of baby yarns, but the first room on the left - A. Whole. Room. With. Nothing. But. Noro. Holy moly. I don't even like Noro and the room was breathtaking. Roz, the owner, was a sweetie, and when I said I didn't like Noro 'cuz it was scratchy (no comment, Kadootje, no comment!), she brought me back to the room and pointed out all the non-wool or little-wool Noro she carries (duh... it's hot-humid-and-sticky Florida... of course she's going to carry non-wools). So I picked up 2 skeins of Chirimen, a blend of cotton, silk, and just 16% wool. Plus, she carried Daria, the corded yarn that's been discontinued. Figured I'd try my hand at some jewelry.

So, I've now quite successfully migrated my polygamist knitting ways from West Coast to East Coast. On needles or waiting to be worked on:
- KnitCol basic sockies.
- Mmmmalabrigo socks.
- Pigeonroof Studio socks.
- Blue Heron Rainbow Metallic Clapotis.
- 1x1 ribbed scarf with the Noro Chirimen (soon as I get a set of #6 needles).

Oh well. Guess it's just me being me!

All Is Well Again

Last night's visit was good. When we saw her at one of the visits yesterday (don't remember if it was AM or afternoon), she had been imagining that someone was trying to remove her tubes and do her harm. She was afraid that because she couldn't scream and with all the medications knocking her out, she was a good target. She insisted that there was another patient who came in and was removing her tubes. Well, as it turned out, the respiratory therapist *did* remove her from the ventilator, but in her state, she apparently thought he was trying to kill her, and she was worried because she couldn't scream. We told her it was the respiratory therapist, showed her how to hit the nurse call button, and also showed her how close her room was to the nurse's station (so everyone could keep an eye out for her), which seemed to calm her down.

While we were there, though, they said she had been off the ventilator long enough, and called for the therapist to come back and hook her back up. Aunt I insisted that either the nurse or dad and I be there when that happened. We were there when he showed up, we introduced her to him (Brian), told her what he was going to do, she nodded, and he went about his business. I held her hand for as long as I was not in his way, then held her foot, talking her through the whole thing. After it was all done, he looked at her and asked if she was okay, she nodded and mouthed 'yes.' I asked her if she was okay, and she did the same thing. Then she went looking for the nurse's call button. I took her hand and made her look at me, and told her it was okay, that it was Brian who put her back on the ventilator and now she could get some rest, let the machine work for a while. She relaxed her grip on the button and held my hand for a while until I think exhaustion took over. When we left, she had closed her eyes and was going to nap.

Last night - 180-degrees different. She was laughing, asking about the weather, scratching her head and saying it felt like bugs, and shifting and wiggling in the bed. The nurse had said they might try to put her in a chair in the afternoon, so when we asked aunt I if they had done that, she said yes. She even said the view looked almost the same as from the bed. Wellllll.... when we talked to the nurse, uh, no. They had decided to concentrate on her lungs and didn't want to push her too far, so the chair would be delayed to today or Saturday. Nice drugs, apparently. Otherwise, she looked better and wasn't having any strange delusions about the resp therapist.

I'm losing track of the progress at each visit. I need to be more vigilant documenting what happened during each visit.

Well, at the end of my allotted time at Starbucks. Back to dad's I go.

Now she's awake enough 2 B scared someone will try to take off her tubes & she can't scream. Comb of resp therapist taking her off vent & pain meds. Hallucinatg

Aunt wasn't moved to chair today. Instead they concentrated on building lung strength. Completely on her own for 1 hr 15 mins.

Next Step, Good Step

At the morning visit, the nurse said they were going to try to get her into a chair this afternoon. She had been on the lowest setting of the ventilator since 5:00 and was very tired, but after a rest (and some meds), they would likely try to get her into the chair today. That's a huge step.

While we were there, they also turned on one of the features of her bed. It's a new-fangled thing that inflates and deflates and moves and... among other things... vibrates. Kinda like a super-charged Magic Fingers bed. Aunt I doesn't like it, but it jiggles her juices around. That's apparently good for her. Like I said, she doesn't like it, but it does something good. She's supposed to be jiggled for 15 minutes every 2 hours. Riiiiight....

Slim line btn being frustrated enuf 2 want 2 go home & are willing 2 fight 2 get there, & being frustrated enuf 2 want 2 go home because U want 2 give up.

Good Day, Bad Day

This morning's visit was a good one. Aunt I was awake, which is good, since she slept all through yesterday after her dialysis. We couldn't wake her at the afternoon visit, and she had just gotten her nighttime drugs when we were there for the evening visit.

Today, though, she was awake enough to ask when she could go outside. One step at a time, Aunt I, one step at a time. Disconnected from the machines and into the chair first, then we see about maybe being able to push a wheelchair outside.

Am hanging at the local mall's Starbucks, taking advantage of their free wifi, watching the old people walk by. Of which, I probably look like one to the relatively few who are younger here.

There are a fair number of people wandering around. Don't know how many are actually buying anything, and many shops in the mall have closed up. The anchor stores are Sears, JCPenney, Macy's, and Dillard's (which is actually Macy's, too, since they bought Dillard's before Macy's was bought by Federated).

Haven't been in a mall near us in a while, so don't know if this is a trend, but there's an insurance kiosk, a "we buy gold" kiosk, and a custom embroidery kiosk, plus one of those bungee-trampoline set-ups for the kids. Odd little collection of stores.

Gonna grab a little lunch before the afternoon visit, then it's off to Leaning Tower of Pizza for dinner. Ethnic, as ChickenKnittle would say...

OMG!!!!! I still would rather be home, but being here just got a teensy smidge better - THEY HAVE CARVEL ICE CREAM HERE!

A Little Bit of Me Time

Since aunt was having dialysis this morning, and it takes about 2 hours (not to mention it really exhausts her), dad and I passed on driving to the hospital this morning. Instead, I got to be a mall rat, wandering the local indoor mall (Gulf View Square on US 19, if anyone's keeping track of Waldo), and enjoying not having a television or radio on constantly.

The mall had a couple of things going for it: Air conditioning. Interesting things to look at. Useless items to laugh at. Lots of sales. Peace. Quiet. No one asking me to be an adult.

Don't get me wrong - I love my dad and we get along just fine. I get my twisted sense of humor all from him, so we laugh at the same things. But I just needed to get away for a bit (and he probably appreciated a little Ray-time himself).

Even though aunt I is making huge progress, it's still slow going, so it will be a while before she's back in her own home again. Sometime this week, I'll head over there and clean out the kitchen, put an end to any science experiments that might be living in her fridge or on the counter, make sure the water still runs and the toilet still flushes.

DH and I were talking about about my return home. I'm still spit-balling end of the month, but going home is really event-driven, not date-driven, so it could be June 28/29 or it could be July 6/7. Or not. I realize just having her in the hospital is a burden on my dad, but at least at this point, he doesn't have to try to interpret her living will. That was weighing heavily on his mind last week when we didn't know really if she was going to pull through. We had no idea if anything we were consenting to was doing any good.

Now that she's doing as well as she is, and we can take a holistic look, everything she's got going on is fixable. Her lungs will heal. Both doctors believe that her kidneys will get back to full functioning again. Her back is fixable. Her MMM is not curable, but it is treatable. Things looked vastly different last week.

Time to vacate this table at Starbucks, my interwebz access point while I'm here (at least it's closer than Panera's). More in short bursts from my phone, or longer posts when I'm back here. Thank you again to all of you who have been sending good wishes to both aunt and me. They are all very much appreciated. Mwuah! to everyone.

Night nurse was talking abt being able to sit in a chair by the end of the week. Still need to confirm w/dr but big news!

Back fm visit. She is breathing on her own fm abt 7AM until she gets really tired, & she was really tired today, so short visit. About to cast on new sox.

Aunt I has been breathing on her own most of the morning. Trying to work up her lung muscles, so she's very tired, but doing it on her own. Go, Aunt I!

Good progress w/aunt, but I will miss Worldwide Knit in Public day (WWKIP) with my knitting peeps. :-(

Florida

I know I need to be here, and in almost every way, I *want* to be here... but I really don't. I wish there was no need for me to be here, and yet I'm glad to be here to be whatever help I can be. While aunt is still in ICU, I'm mainly here for dad.

Aunt had semi-permanent dialysis port in her shoulder this morning. It's less likely to get infected and may be easier to get the job done. Both doctors think dialysis is a temporary situation, but they're talking 6-8 weeks temporary, not 6-8 days temporary. She was pretty alert this morning, considering she had just had the surgery, so I didn't stay long.

I really can't stand this part of the world. Believe me, if it weren't for family, there would be no reason to come here. Ever.

Good aunt day. More alert, & we were better able to read her lips and answer her questions. She'll have dialysis tomorrow, so she'll prob be out of it again.

Dialysis days really exhaust my aunt. So tired she only opened her eyes for 3-4 mins during evening visiting hours. She did squeeze my hand which felt good.

Small Steps

Got some smiles, waves, and foot wiggles from aunt yesterday. When I visited this morning, she was in the middle of her dialysis procedure, so I was asked to wait outside. By the time they finished, she was exhausted and sleeping, so dad and I will go back this afternoon. I did notice that they cut her oxygen down to 40% (from 50%). Little steps. Thank you to all of you who are sending your warm thoughts and healing wishes.

Latest update: Trach was done @ 1:00 so she is still in immediate post-op state. They will reduce sedation gradually but nurse said best to visit tomorrow.

Dialysis doing some good; dad & I will give dr OK to do aunt's tracheostomy tomorrow. Get tubes out of throat, lessen sedation, reduce respirator time. Praying.

Home fm Las Vegas. Flight delay, but still time to celebrate w/dinner @ the scene of the crime. Vegas is still 1 of my favoritist places.