LJ Idol Season 6 - Week 7 - One Touch Click

It's been a roller coaster ride. Yesterday, I was physically exhausted by the chemicals that accompanied all the emotions.

After the first call in September, we actually started talking about what it would be like, after he gets a kidney. How we could pick up and go for a trip on last minute super saver prices - Baxter requires at least two weeks to set up a travel delivery. Or, we could take a road trip without planning cargo space. We did most of this talking on the cruise that happened in spite of how close he was to the top of the list. We halfway expected not to go on the cruise, to be kept in town by a new kidney. When we got back from the trip, we talked about it happening any day.

It started to hit home to me when I was praying for safe travels for my friends over Thanksgiving weekend. I started thinking about all the other people who would be on the road, and how it's so often people in wrecks that donate. Donate. Not exactly a painless, out of sight, automatic payroll deduction to United Way. How do you pray, "protect the travels on the road" and "bring my dearest a kidney" in the same breath?

And then Christmas planning on the yet-again-shoestring budget, and the expectations diminished in our everyday conversations. Oh, at a recent visit to the clinic, they verified that he was the number one patient on the Type O list. But somehow, it started feeling distant. When Mom asked if she and Daddy should dump plans for us to go there for Christmas and start looking for flights to Lexington, I told her how much Flar was looking forward to Christmas in San Antonio. She worried about taking him off the list for 10 days. In the back of my head, the little ghoul said "New Year's is the drinking holiday, we'll be home by then."

I was aware I was squandering the extra time I was given by the gift of no work for weeks on end. I ramped up my job search, and even got some interviews, but I did little concrete to prepare the house for disruption of routines - whether for working full-time, traveling for Christmas, or the hospital stay a transplant would entail. It all still seemed like talk.

When suddenly, I went from "no work this week" to "can you come in on Tuesday and Wednesday?" to working full-time, except Friday mornings.

When suddenly, I had a third of the Christmas shopping and crafting done, and mostly accumulated in the dining room for wrapping (praise be to Mary Kay ladies who not only deliver, but gift-wrap as well!)

When suddenly, the call came. "Be ready to get more calls. Be ready for disappointment." Oh, I couldn't go back to sleep after that call, even though we had over two hours more before we'd be leaving the house. But it didn't seem real. We chatted in the hospital while we waited through the admitting process. I called work when I knew someone would be there to take the call. "Do you have an advanced directive? Did you bring it?" I'm the proxy, so we reviewed what I already knew, but I asked more detailed questions, with every one followed up by "but I don't want that to happen."

There aren't nearly as many procedures that count as major surgery as there used to be. With so many surgeries done by camera through tiny incisions, the prospect of a cesarean-sized incision and working with vessels large enough to handle the kind of blood flow a kidney uses... But we didn't know for sure the surgery would happen, and it was easy to talk in vagueness and concentrate on scheduling practicalities. I'd go to work, but only after we talked to the doctor and had some kind of understanding about how much warning I'd get to come back. It would be hours until they knew if he passed the cross-matching testing, if the other patient (highly sensitized) passed, if the kidney was good enough, if the surgery would really happen.

Going to work was a welcome distraction. Flar had Critter to keep him company at the hospital while he waited. I had permission to keep my phone on in Ops. I started indexing dailies, and when I switched to scanning, I kept one earbud in to listen for calls. I popped up twice to answer calls, but none from Flar. My manager, R, took me aside to check into plans - for the day, the week, etc. Would I want to work or not; how much? I even got the chance to ask about moving to full-time, since I'm still technically a part-time employee. I'd just coded back in for scanning, when I saw a voicemail -- I hadn't caught a call during the meeting. It was Flar, the operation was scheduled for 4pm. This was at about 2pm (funny, I remembered the :45 from when I clocked out when I wrote up a timeline, but not the hour).

That's when it hit. Everything was really going to happen. It was the most intense feeling I can remember. Pure adrenaline. Fear, excitement -- not really translating as happiness: I seriously couldn't understand why I wanted to sob uncontrollably. When I told R that it was really happening, that I had time to finish out the end of a bundle, she could tell I was almost losing it. She offered a hug and held me tight and then I got back to work. Routine, detailed tasks. They are the bomb for settling me out. I really don't think I could have gotten into a car and driven if not for stopping and finishing out and tidying up properly.

I'd tried to chronicle the day; I updated facebook diligently. But it seems a blur even now. Everything has changed. The surgery was successful. He came back to me, as I'd demanded when they wheeled him off. The outlook is bright. He's no longer a short-timer.

All because of the final gift of a stranger. Maybe his family decided. Maybe they knew her wishes. Or maybe this stranger had thought ahead and made sure.

You can.

It starts with One Click.


For Kentucky Residents

To find the link for your state's registry
I do not have information about how to register in other countries; I welcome more information about that in comments.
--

This entry was written for inclusion in The Real LJ Idol writing competition on Live Journal, Topic 7: One Touch.

location: bed mood: sleepy Tags: flar, idol 6, kidney

4:49 am First Call

There might be a kidney. After your dialysis is done, come in to draw blood. Expect to go home to wait 4 hours.

7:00 am Second Call

There might be two kidneys. Your chances of a transplant are better; Come to admitting instead of the transplant unit.

8:30 am Call to work

I'm going to be late this morning. ... I'm not sure when I'll be there; Matt may get a kidney today. I'm coming in after we talk to the doctor.

9:40 am Blood draws

She found a "good bleeder" for the draws/IV. Good thing, too. 11 vials of blood for testing.

History taken by student doctor. She crossed out Tigger's age when I said we were hoping to slide him by the "over 18" swine flu visitation restrictions.

The night doctor for the transplant team came in to answer questions about what to expect.

One of the nephrologists came by to tell Flar about a new anti-rejection drug therapy. An anti-psoriasis drug is being used for anti-rejection with good results.

Critter got to the room before I left to go to work. He stayed with Flar until his next class.

10:45 am Clocked in at work

Indexed the dailies. Switched to scanning. Had Chinese for lunch. Met with manager about forecast for my hours. Will be able to keep up with dailies, interested in full-time.

Pause to consider how great my job is, and how thankful I am for the people I work with and for.

Started scanning; phone call from Flar - surgery scheduled for 4pm.

How managers just KNOW when you're holding back tears, and ask anyway and hug with that tight kind of as long as you need it hug?

1:45 pm Clocked out; drove to hospital.

2:23 pm called C to ask her to pray, tell others, pickup Tigger at school & bring to hospital.

4 pm Flar moved to Pre-op. Nurses called Dr. Lock, the expert at removing rings.

5 pm Flar's wedding ring removed for the first time in 28 years, 6 months & 23 days.

Truly arrived and cane back to Pre-op.

C arrived with Tigger, who came back to Pre-op.

6 pm Flar wheeled into surgery.

7:20 pm Hospital tested fire alarm system. Flubbed starting the vidcam to catch CuppyKate faking a freakout.

Have I mentioned that even a studying CuppyKate is a welcome, cheerful addition to any waiting room?

8:20 pm OR nurse called to say they are closing.

Posted via LiveJournal.app.

location: Surgery waiting at UK Hospital mood: Waiting Tags: flar, kidney, via ljapp

4:49 am First Call

There might be a kidney. After your dialysis is done, come in to draw blood. Expect to go home to wait 4 hours.

7:00 am Second Call

There might be two kidneys. Your chances of a transplant are better; Come to admitting instead of the transplant unit.

8:30 am Call to work

I'm going to be late this morning. ... I'm not sure when I'll be there; Matt may get a kidney today. I'm coming in after we talk to the doctor.

9:40 am Blood draws

She found a "good bleeder" for the draws/IV. Good thing, too. 11 vials of blood for testing.

History taken by student doctor. She crossed out Tigger's age when I said we were hoping to slide him by the "over 18" swine flu visitation restrictions.

The night doctor for the transplant team came in to answer questions about what to expect.

One of the nephrologists came by to tell Flar about a new anti-rejection drug therapy. An anti-psoriasis drug is being used for anti-rejection with good results.

Critter got to the room before I left to go to work. He stayed with Flar until his next class.

10:45 am Clocked in at work

Indexed the dailies. Switched to scanning. Had Chinese for lunch. Met with manager about forecast for my hours. Will be able to keep up with dailies, interested in full-time.

Pause to consider how great my job is, and how thankful I am for the people I work with and for.

Started scanning; phone call from Flar - surgery scheduled for 4pm.

How managers just KNOW when you're holding back tears, and ask anyway and hug with that tight kind of as long as you need it hug?

1:45 pm Clocked out; drove to hospital.

2:23 pm called C to ask her to pray, tell others, pickup Tigger at school & bring to hospital.

4 pm Flar moved to Pre-op. Nurses called Dr. Lock, the expert at removing rings.

5 pm Flar's wedding ring removed for the first time in 28 years, 6 months & 23 days.

Truly arrived and cane back to Pre-op.

C arrived with Tigger, who came back to Pre-op.

6 pm Flar wheeled into surgery.

7:20 pm Hospital tested fire alarm system. Flubbed starting the vidcam to catch CuppyKate faking a freakout.

Have I mentioned that even a studying CuppyKate is a welcome, cheerful addition to any waiting room?

8:20 pm OR nurse called to say they are closing.

Posted via LiveJournal.app.

location: Surgery waiting at UK Hospital mood: Waiting Tags: flar, kidney, via ljapp

Last night, Flar was up and down at least hourly, sometimes more frequently. Even though I'd only had four hours of Nyquil-enhanced sleep, I determined that he shouldn't drive this morning. So we all piled into the Audi to take Tigger to school and Flar to his scheduled test, with the intention to follow-up with a visit to his GI or the ER. I threw the least bulky NutriSystem foods into my purse to tide me through breakfast and lunch and grabbed a bottle of water.

Tigger got to school early as is his preference, then we waited for Flar's GI's office to open. I had my breakfast while we waited: a NutriSystem® Cranberry Orange Pastry that was a combination dry/sticky not quite pound cake consistency -- not my definition of pastry thank you very much, an ounce of cheese and a half-cup of juice.

No doctors on Fridays - they're all doing procedures and hospital rounds. Time seemed to drag in the waiting room for nuclear medicine. It was longer than usual before Flar was taken back, and the hour-and-a-half that followed seemed to take forever. Mostly, this was due to me being congested and the waiting room being cold. At noon I had my lunch - a NutriSystem® Fudge Graham Bar which had a satisfying quantity of chocolate chips, and another ounce off cheese.

The doctor told Flar that if his gall bladder is the problem, it could cause the symptoms he's been having, and that he should just dose up with Immodium and wait for test results.

On the way home, I went in to the RIte Aid and picked up Immodium for Flar and V-8 for the rest of my lunch (I've remembered the solution to reducing the sheer bulk of veggies). While I was in the store, Flar called the bank and verified that the Money™ had finally hit his business account. We stopped on the way home to deposit a Very Large Check™, and the teller was sweet enough to get the bank phone number from us and call to verify the funds so that he didn't have to put a hold on the check. Yay for Great Customer Service!

Now Flar is checking email, and I'm going to sit down to write some Moderately Large Checks™ to deliver and mail today. Tomorrow we get to go buy a new washer/dryer pair to replace our Kenmores. Hey - they lasted 20 years, what more can you ask of a large household appliance?

mood: sick Tags: bibble, finances, flar, health

I goofed off this weekend, got plenty of sleep, but was still exhausted when I was done working with the two year olds. I'm the lead teacher in the classroom, and I think that has a lot to do with it. When I helped in the three year old room Wednesday night, I felt fine. Easter weekend there are seven service times, and I will be serving in early childhood during two of them. I feel like that will be challenging.

In goofing off, I cleared out my LJ inbox. Since I gave up on staying caught up on all my friends' journals, I was relying on notifications for some journals, but I'd gotten behind by 300+ messages.

I started NutriSystem this weekend with two flex days in a row. Today is my first day eating the NutriSystems foods and so far, it's been yummy. I had a cereal with fresh banana slices this morning, and flavored my milk with a sugar-free malted-chocolate mix (5 cal.) that I found at Kroger. Some people can't stand plain water. My achilles drink is milk. The chocolatey flavor helped. For lunch, we walked next door to Fourth Street and got subway salads. I'd brought NutriSystem Fettuccini Alfredo (in a cup, like instant ramen) and an ounce of cheese to go with it.

Saturday was rough. I got my mealtimes all screwed up and hadn't planned ahead, so figuring out what to eat wasn't easy and I was really hungry in the evening. Since then, I've been "pleasantly empty." It's not a raging hunger feeling, and it's nice not to feel like I'm stuffed. My issue will be staying with it, and overcoming the challenge of planning balanced meals when I go off NutriSystem. Using the flex system - 5 days on, 2 days off - makes me learn while I'm losing. ;)

Flar spent the weekend in bed. He ran a fever on Saturday, but that was gone on Sunday. We think he's reacting too strongly to the Reglan -- lots of trips to the bathroom -- and he's just feeling really drained. He stopped taking the Reglan on Sunday, and that seemed to help. Today, his doctor suggested he take half a pill, only before big meals, rather than a whole pill before every meal and at bedtime.

We didn't get to planning a budget. :( Maybe I'll tackle some of the work on it this week.

The bank's lawyers are now talking about closing the loan paperwork tomorrow, so the new forecast for Money™ is Wednesday. Which means I'm making a trip to Wal-Mart tonight for more undies for me. So far we've been able to avoid a trip to the laundromat, but I'm giong to be a busy laundress whenever new machines do appear.

mood: okay Tags: bibble, diet, flar, health

Flar saw his GI specialist yesterday and his Nephrologist today. She prescribed Reglan to help empty his tummy faster, and scheduled him for a gallbladder function test. He looked at the CT from Tuesday and said it showed bleeding from a blown cyst. There is also some concern that the internal part of his PD cath had gotten badly situated. They may be able to do something about that. Meanwhile, he is staying in bed on Lortabs as much as possible.

He finally got a closing statement for the development loan that's generating the Money™ and there is a more believable forecast of funding on Monday.

My NutriSystem food came today, along with a food journal, and a recipe book & restaurant guide for the flex days. I've been practicing at recording my foods: no wonder I'm not losing weight on my own -- my caloric intake is way over what it should be (duh).

I'm going to officially start eating NutriSystem foods on Monday. That gives me tomorrow and Sunday to plan menus and grocery shop for the dairy and fruits and vegetables.

Powers finally gave up my car to me yesterday. There's a code that only a dealer can clear, so I get to sit at Don Jacobs sometime next week. Sigh. I traded Critter's van for my bug. Powers is going to change the oil and run road-trip type checkups on it.

Didn't get my Revive homework done this week. Talked to my phone buddy though. Thoughts about fighting perfectionism and why I started going to Revive made the talk extremely worthwhile. More talking needed tonight with my group leader.

Need to read my homework in Thin Within now.

mood: okay Tags: bibble, cars, diet, flar, the mat

He really only called to let me know where he was going. He was honestly surprised that I would meet him there. He kinda had a skimpy raising when it came to "family goes to the hospital. period"

It started on the driving home - sudden pain, waves of nausea. He was this side of the river, so he stubbornly drove himself to the ER, just calling to tell me the plan. I got there while he was still in triage.

heh. modern ERs call it triage, but there's no big blark marker, no X on the forehead. Just paperwork questions - confirm what the computer already knows, etc.

We waited a good while to be called back - always a good sign in the ER, when they think the other people are more sick, right?

Overheard from the next ER exam room: "Hey, I heard you were looking for rooms, it's only my hand that's messed up." "No sir, we're looking for a room upstairs to admit someone; you're fine where you are." Good people are everywhere, even in pain.

Flar was attended by two nurses, as his ER stay spanned a shift change. Two nice looking male nurses as it happens, not that Flar noticed or would have cared. ;) His nurse questioned him, palpated him, then hooked him up with an IV lock to (a) take blood for a CBC and (b) give him morphine. That sounds like everything happened at once, but there was actually an uncomfortable wait before the IV, and Flar was in a lot of pain (7 on his 0-10 personal scale) until they gave him the morphine. They wheeled him out at one point for a CT scan and later wheeled the ultrasound cart in to see him.

They ruled out infection and any other stay-in-the-hospital diagnoses, came up with a couple of theories to explain the pain, and sent him home with a prescription for Lortab. Theory is, it was either his gallbladder complaining about Flar switching back to high-fat American food from his healthy seafood consumption in Barcelona, or a cyst burst in his kidney causing a bleed-out. Or both.

Knight and Ro met us at the hospital, so Knight could drive Flar home in Flar's truck, by way of the 24 hour Kroger pharmacy. I went on to work, and got home around 2. I picked up an Arby's Roastburger on the way in, and I've gotta say after this second try, that I don't care for them. Give me a regular Arby's sandwich or a real hamburger.

So Flar's spending the day in bed, sleeping as much as possible, and riding out the pain on Lortabs. They recommended he follow a liquid diet until the pain subsides, then a low-fat diet. Since he's also on a low-sodium, low-phosphorus diet, I'm going to pop out today and get a chicken and some beef bones to make up some healthy broth for him to sip while he's on the liquid diet.

Thanks to everyone who prayed and sent well-wishes.

mood: calm Tags: flar, health

I haven't been writing. At first it was an attempt to avoid "time-wasting" but I haven't been journalling and it's a loss, and i'll start again.

but for today, just bibble.

still no Money™

it's payday though, so Flar said I could go ahead and order the Nutrisystem. I'm starting back on the most successful weight loss plan I ever tried, now with convenient home delivery. I'm also going back to the Food Group, since all the Nutrisystem really does is conquer portions and make food prep easier.

I also made the hotel reservations and arranged an hour of movers for Bringing Critter Home™ I'm driving down there in his van the 22nd and 23rd and driving back here the 24th and 25th after packing up the van with the contents of his room. Bonus, the first hotel stay in Jackson is free because I cashed in Choice Rewards points.

I listed the washer and dryer on Craigslist. We've done the initial shopping; I need to check reviews, then after there's Money™ we're heading to ADI to see if they can beat all the other prices. And we have agreed to be content to buy new underwear if needed to outlast the advent of the Money™ or if we have to order the machines. Bonus, we're looking at front loaders, which are tres nifty.

The last couple of days that Flar was gone, I got caught up on "current" filing. There is no longer paperwork lurking in piles for me to sort out. There is still "old" filing hiding in the freezer room with the filling cabinets in disarray (I used the roll top and milk crates this weekend), and maybe some is hiding under the stairs. Dizzy has figured out how to pull files out of the milk crates for noshing, so I'm motivated to fix the filling cabinets next.

Flar just called on his way home from work. He's going to the emergency room in GI distress; pray for him. Cutting off the bibble to go meet him.

mood: worried Tags: bibble, flar

My dearest,

I look on and see how impossibly hard all of life has become for you right now, and I have only a glimpse of how it must feel.

My reading tells me how important your work is to you. How devastating it must be then, during this difficult season. And yet, when I look on, I have hope. I see hard circumstances, and I'm relieved that you are the man in the middle of them. You have an amazing track record of pulling miracles out of a hat. You've never given up, you've always searched and found a solution that far exceeded what I could have hoped in every rough spot that's come before us. I have faith in your perseverance and your cleverness, I have faith that it will all work out.

I've experienced being dumped on, and breaking things off. In those dark times, I knew it was all about me, and I was a mess. Here you are, at the very beginning of grief, feeling the hurt of loss and separation; but it wasn't you, she's the mess right now. I've no idea how hard it was to have to let go. I respect you so much for the love you have shown and continue to show. I admire the lengths to which you were willing to go, how much you were willing to endure before you had to end it. I can't replace her. I can't be her. But I'm here, and I'm ready to be by your side when you ask it.

I can't imagine what it must be like to be this sick. You have always been so strong, so healthy. I've always admired your athletic skill and willingness to work hard physically. You are still so strong. You have carried on against each obstacle, living life as normally as possible as the physical challenges pile up. It's easy to lose hope in tomorrow when the fight for today gets so tough. What you don't see is that I know you will survive this fight, that you will come through it stronger and be an inspiration for others. Years from now, you will look back in wonder at all that you overcame.

Right now, while it's dark and gloomy, I will be your hope. I will keep your spirit safe for you and return it to you when you're ready for it. I can be your hope, because I see the you that you're denying right now. Strong, loving and determined. You are beloved, but even more so, you are admired and respected and appreciated.

With love and respect,

Because so often, it's not about me.

–––––

The preceding has been my entry for LJ Idol Season 5, Topic 10, YOU'RE SO VAIN - YOU PROBABLY THINK THIS TOPIC IS ABOUT YOU.

mood: hopeful Tags: flar, lj idol

I've always thrilled to roller coasters. Even before I developed my unusual rating system, even after the ratings fell away. The thrill of anticipation, the rush of speed and release of control. I came, I rode, I screamed was for a time I rode, I came, I came -- who knew what silence could bring? Of late, I've found a more treacherous roller coaster. I find myself drawn again and again to the idea of founding my hope in the destination instead of the journey, in temporal values over eternal.

Faith is the confidence that what we hope for will actually happen; it gives us assurance about things we cannot see. Hebrews 11:1

I began this year by publicly proclaiming my hope in God for His plans for me in the coming year. I included in my list of faithful knowledge about the coming year: 2008 will see God work in my marriage to bring Flar and I closer together; to return lost intimacy and connection. I alluded to this again in my Valentine entry, and recorded the beginnings of this journey when I wrote out my faith story, also for LJ Idol.

For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland. Isaiah 43:19

I haven't been attending No Stones lately. I like to tell myself that I'm letting some of the lessons learned sink in more deeply before I dig back in. In this season of abundance of work hours, I'm enjoying the Friday nights home with Flar. And I've been kind of coasting on this hope. Believing that God would do this great work without my active participation.

I enjoyed talking more openly with Flar, but I wasn't doing any work toward more. Then came the storm of hope. When it looked like Gaucha might leave Flar, I was there for him to pour out his despair. We had made these first tentative steps so that he could turn to me with his tears. But I slipped loose my own anchor, setting my hope on Flar turning to me, rather than holding onto faith in God's plans as yet unrevealed. Oh, it was so hard to feel the depth of Flar's hurt, but there was that deep inside of me that saw it as a path back to me. The roller coaster ride began. One day the world was ending, the next she was coming back to him.

And then a very smart lady asked me "what's changed in Jesus, this week from last?" And I got just a little bit of the selfish kicked out of me.

But a funny thing about storms. It seems to be the hard times that bring us together. When I was in tears over dashed false hopes, we started talking again. About wanting us to be stronger. About being willing to work on us -- no matter what happened with Gaucha. Flar agreed to go a marriage class with me at Quest. Even though he doesn't wanna be involved in this God stuff. He agreed to block out his schedule to go to all six weeks of Sunday afternoons. And we're starting next week.

We've been reminded of how far we are from where we want to be. But I can look back at merely six months ago, and be amazed at my faithful hopes. Based on God's promises -- not any indications of likelihood. My imagination pales at where we will be in another six months.

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

–––––

The preceding has been my entry for LJ Idol Season 5, Topic 7, Hope

mood: excited music: Atmosphere, by Toby Mac Tags: faith, flar, hope, lj idol

Flar's been back on PD since Monday. He's doing half-volume fills, using the Tidal feature which leaves some fluid behind on each drain, to avoid Drain Pain. Monday night, we lost power at 4:45pm, so we had to use a manual set to drain in the morning. Tuesday night, he had minimal Drain Pain. Wednesday night, we stopped the initial drain soon enough to avoid pain, and the rest of the night he didn't even get woken up by it. Thursday night, he did the setup and connect on his own, and let the pain go a bit longer than he should have - he was sore most of Friday. Last night went pretty well.

There has been NO leakage out of his exit site, so we're optimistic that he'll do well on 1.5 liter fills this week.

Monday, Flar has another appointment with his surgeon. I've upgraded him to bandaids on his incision site, but we're still using gauze and tape for his exit site. He's going to ask about ongoing care, and when he can start swimming again.

We're generating an empty box a night, suitable for holding 12 liters of liquid. We're going to use them in the process of culling and selling books, but there will be way more than we need...

mood: happy Tags: flar

The AWP was great. A weekend long home visit, where friends bring you food, fix it, feed you, and clean up after you. We made tie-dye shirts, and I've a great design waiting for me to turn it into t-shirts transfers to mail out to peeps.

Mom and Dad's Anniversary party/Mom's Birthday party went very nicely. The Radisson duded up the room quite nicely. We had two rounds set for 16; scattered cocktail tables; a host bar; a table with appetizers in chafing dishes and a chef's station for prepping pasta dishes and stir-fry. The food was yummy; the service was friendly and efficient. Mom and Dad loved their party. :)

All the invitations are out for the next two parties, with the exception of one of Critter's friends, for whom he has yet to find an address. Fortunately, he does have an email address, so the friend has gotten the evitation.

Mom has been helping me catch up. The kitchen is in good shape, but I still have the grill rocks, grill racks, griddle and sushi mats to clean. The laundry is coming along; all the clean is folded, but there are many more loads to run. Today, I'm in Flar's office, so I'll get all caught up on finances.

Flar saw his surgeon on Monday, and has another week of "taking it easy" (which we are enforcing as "no driving"). He has another "flush and fill" (it's really a fill and drain in order to flush the catheter, but somehow familiar terms tend to stick) tomorrow, and then will start PD on Monday with reduced fill quantities. He's healing well, and itches terribly.

Tomorrow, we have an honors breakfast to attend in the morning for Critter, then graduation is Friday evening. I'm finally going back to Life Group in the morning, but I will once again have to miss The Mat. Saturday, we're having a dessert reception in honor of our graduate, after he returns with his posse from an evening out in a stretch limo. It's arriving at the house at 3:30pm to begin the process of picking up all of them, then taking them to the Movie Tavern to see Kung Fu Panda. We can't buy tickets ahead until tomorrow. (*pout*)

The fourth party is Tigger's sleepover; always laid-back, this year he's inviting seven friends.

Enough procrastination, time to get to work. :)

mood: happy Tags: bibble, flar, parties

I've been busier than some particularly colorful metaphor for busy-ness lately.

Yesterday, I wrote these two important emails:

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Right. Life surrounding the AWP is already made interesting this year by Flar starting home dialysis, Mom and Dad celebrating their 50th Wedding Anniversary and Mom's 70th birthday, and Critter graduating. But that wasn't interesting enough.

Flar has been recalled for warranty service and is undergoing surgery to insert a replacement catheter on Friday. He's going to be in a wheelchair [which I need to arrange today] all weekend, and I'm In Charge(tm). The party will still go on, in the most laid-back form EVAR. We're likely to be gone when people show up on Friday, expecting to arrive home sometime after 6pm. Matt will be highly entertaining in his post-op daze. I'm seeking volunteers for replacement host Friday afternoon. [So far: Tigger and Sunny will be here around noon; Critter will be here after school; Knight will be here when he wakes up.]

Tie-dye will happen Saturday, with rinsing and drying on Sunday.

No silkscreening this year, but if I (or any other energetic soul) put together a graphic for "AWP 2008: Peace, Love and Potluck" then we will print transfers for anyone interested. So there will still be ironing. :)

Sushi can still happen if they will accept an order tomorrow [today] (we let that one get away from us in pre-planning).

If anyone who scraps has sixty-ish paper, we can print and assemble buttons during the party. [Sunny sounds interested in doing this in the afternoon.] I haven't had time to think about it.

I'll be offsite once during the party: 11:55am service on Sunday. I won't be at the Mat or serving in KQJr due to the timing of the surgery, and post-anesthesia protocols.

I think this AWP will also be the first Raccoon Day party in years. I feel it deserves the title.

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Hi,

Flar's exit site has been leaking substantially after PD the last two nights, and today [yesterday] his surgeon determined that it will need to be replaced. He is scheduled for surgery on Friday afternoon, to remove the existing catheter and insert a new one in a different location in his abdomen. We will be in the out-patient surgery on the second floor at St. Joe's. His check-in time is noon and his surgery is scheduled for 2pm, so we expect to be there until 6pm, and then home for at least the holiday weekend, and (I hope) longer, for Flar to fully heal.

I will not be at the Mat on Saturday night, and I do not think I will be able to be at church on Saturday to serve with the two year olds. I plan to attend the 11:55am service on Sunday.

Please pray. I'm in a Romans 8:26 headspace right now. We need prayers, and the Holy Spirit knows what those prayers should be.

[And the Holy Spirit helps us in our weakness. For example, we don’t know what God wants us to pray for. But the Holy Spirit prays for us with groanings that cannot be expressed in words. Romans 8:26 (NLT)]

mood: ?? Tags: awp, flar, surgery

.. that started Friday night.

I didn't drive Critter to Cincy - he drove himself; arrived safely.

I was home with Flar. Earlier in the evening, when I was changing his dressings, I nicked his catheter with the scissors I was using to get rid of the gauze and tape. Quiet panic ensued. We wrapped the tube with sterile gauze and tape, and clamped off both sides of the nick with bread clips, while we waited for a call-back from his surgeon. He recommended we replace the bread clips with hemostats, but that we could wait until the morning to meeting him at the ER at St. Joe.

That set me on a difficult but important scavenger hunt. I'm pretty sure I have a hemostat somewhere in the house. I didn't even try for that -- I haven't dug into my craft supplies yet. Grogan's was closed. CVS, Walgreen's and Wal-Mart don't carry hemostats. All the nurses I called rolled over to voice mail, and I know a few. I found B, who was playing darts downtown. She had one, and would be home around 10:30. I called D, who was eating Passover Seder with his mother, but he would be home at 10 and he had two. Ch checked in with me, as I wasn't at No Stones, and I asked her to ask A if she had any. Eventually N called me back - Ch hadn't understood what I was asking, and when she repeated what I said, A said she had some. She said she would go home and get one, and meet me at the McD's. Critter drove me. He bought me food and made me eat while we waited. When A arrived, she prayed with me.

Flar and I changed out the hemostat for the skinward bread clip, then bandaged him all up. By the time we were done, he looked like a bad special effects "operation gone wrong." I put in Oceans 11, 12 & 13 for him, fixed him dinner and lemon kool-aid, called a fraction of the people I had worried about us, and went to bed. Flar sat up in his recliner all night. He only watched one of the movies, then dozed off and on after that.

Somewhere in the middle of all that, Critter gave Flar airhugs (so it was before the bandaging was complete), and drove up to Cincy. Tigger was on phone duty, in order to give Critter directions over the phone as he got into the city. Critter called once to ask I-71 vs I-75, and then he texted us at 1am and 3:30am, when he arrived and left the station in Cincinnati.

We got to St. Joe at 8 in the morning, and we left at 1pm. The ER staff was friendly and efficient about getting us checked in and back to an exam room. Our doctor arrived shortly after we did, but as he was on-call Saturday, he had to treat some patients who were more critical than Flar before he could see us. He unwrapped the coverings and when he examined the tubing, he couldn't find the nick. Flar and I had both seen bubbles of liquid however, so he determined the safest course was to re-terminate the catheter at the point where we'd clamped it with the hemostat. He put a new fitting on, put a shot of heparin in to prevent proteins from sticking to it, and prescribed Flar a course of antibiotics, just in case.

We picked up KFC and meds on the way home, and after lunch Flar napped for most of the rest of the day. Meanwhile, I started in on the jacuzzi room cleaning, then drove Tigger to his sleepover. I spent the rest of the day talking to some people on the phone, and cleaning out old boxes. I have piles of fabric and some yard sale items in the front hall now, including two footlockers to use for storing yard sale stuff. I toted out three boxes of trash, and I found some fun memories to distribute around the family, like old chore charts. I also swept and scrubbed, and washed three loads of work towels and dog towels. By the end of the day, I'd cleared the space to store 48 boxes of dialysate, and rearranged the laundry room just a little to accommodate the coming wall of supplies.

Sunday, I attended service and worked with the twos. After church, I picked up Tigger and chinese takeout. Tigger and Flar napped while I worked on the rest of the jacuzzi room. I cleared off the jacuzzi, folded a whole bunch of laundry, and put away odds and ends that were cluttering it up. The room is looking good. I've got a job ahead of me, finishing off the sewing table and the folding table, but I'm pushing through and I'm excited about what the room will be when we're done. In the evening, we went to see the Jackie Chan/Jet Li movie at the Movie Tavern. Flar enjoyed his first real shower since the PD catheter was inserted, and he watched Oceans 13 as I drifted to sleep.

This morning, Flar drove Tigger to school, and let me sleep in. I'm running laundry today, and reorganizing the bathroom cabinets. I appear to have a serious case of spring fever at last. ;)

mood: determined Tags: bibble, cleaning, flar, surgery

Flar is working in his office in Louisville today, and since I'm his driver until at least Monday, I'm here in the office with him. This time, I remembered to bring an ethernet cable. (They don't have a guest wifi.)

I brought (at least) a week's worth of mail to sort, then I'll work on accounting and bills and such.

Starting yesterday, he cut way back on his pain meds -- he's only taking one at bedtime. We have appointments for the surgeon on Monday and PD training on Tuesday. The "standard" training is three days long, but Flar has experience doing this with his mom, so we're hoping to be cleared in one morning. Flar hates being trapped at any medical office for hours at a time.

Critter's handling driving Tigger around for me today. I may need help with that next week, though, as Critter is going to Texas for a week, starting Saturday.

mood: busy Tags: bibble, flar

I'm down to 220, as of this morning on the scale. That's a 10 pound loss since the beginning of the year, so yay!

I've got a nifty weight-ticker here, but for some reason I can't successfully hot-link to it.

I officially give up on reading Every Single Entry in my friends list. I'm now reading backwards from whenever I have the time, and I have a couple of journals set up to notify me of new entries. When that's working.

Flar is doing well. His incisions look good, and we get to play doctor (including masks and gloves) when I changed his dressings. His doctor prescribed Lortab for the pain, which is keeping him comfortable, and sleepier than usual. He started out on one tab per three hours, and has dropped down to every four hours. He's been walking around the house, sitting in the family room and the recliner in our bedroom, and today he's graduated back to bed -- getting out of bed was hard enough that he avoided it for the first few days.

For the last two weekends, I made cookies on Sunday. Flar has now declared Sundays to be Cookie day. (And yes, I've been eating some of the cookies, and still losing weight.)

Critter went to Thunder Over Louisville with Agtiger and his daughter yesterday. It was great to see Agtiger again - it's been a few years. I'd never met his daughter before, although I believe she spent three or four days of her gestation here.

Speaking of which, it's getting to be about that time, to put up invitations to this year's potluck. The party previously known as the PWP will be henceforth called the AWP, for Anybody Wanna Potluck, as we both widen the invitation target, and take the primary focus away from specifically polyamory. Look for more info Real Soon Now.

But it is high time for me to be making with the cookie making. I've decided to make extruded butter cookies today, so I get to play with a gadget.

mood: pleased Tags: awp, bibble, diet, flar, surgery

Matt is drowsing off and on due to his pain meds, but he is doing well. He can get up and move around on his own - he even fixed his own breakfast this morning.

We got instructions at the hospital about caring for his incision and supplies to use when changing his dressing. The nurses helped him to sit up, and then I helped him to dress. We stopped at Kroger on the way home to drop off his pain med prescription, then I worked on getting him all settled in his recliner in the bedroom. He opted for his iPod, hot tamales and water. When the boys got home from tutoring club, I went back to Kroger and along with the medicine, I got him a plant to spruce up his bedside table.

One of the instructions the doctor gave us, and the nurses repeated, was that I was to stay with him for 24 hours after the surgery. This gave me a sense of responsibility to watch out for him while he got up and moved around. He moved into the family room last night for a bit, then back into the bedroom around midnight. Around 3am, he decided to try the bed. As soon as he was in it, he realized he'd be trapped there, so he woke me up. I helped him back up from the bed, then followed him around while he walked a bit. He settled back into the couch in the family room for the rest of the night. I didn't get back to sleep right away, so when it was time to wake up and fix breakfast for the the boys, I was sort of Zombie Mom. I got them up, fixed breakfast in time for them to leave -- Critter drove Tigger to school this morning, then I went back to sleep until almost 11, leaving Flar on his own. I also left out the ham from breakfast, which Flar put away for me when he got up to fix his own breakfast.

I don't remember how much I've written here about Flar's kidney condition. Flar has a condition, polycystic kidneys, which develops in severity over time. CKD stands for Chronic Kidney Disease, since the causes for kidney failure are many, but the treatment of the results is often similar. Flar's maternal grandfather and mother both died due to CKD. It affects men earlier in life; I don't know if Flar ever knew his grandfather. His mother didn't face kidney failure until she was past the current age limit for kidney transplant patients; I believe she was 74 when she died.

Flar's kidney function dipped below 20% last year, and he was placed on the kidney transplant list. Live donors would of course be the best alternative to cadaver donation. Unfortunately, I am the wrong blood type, Flar's brother also has polycystic kidneys, and many of our friends who have asked about it have either the wrong blood type, or medical conditions that exclude them as live donors. At the time, Gaucha volunteered to have compatibility testing done, as a potential live donor. This involves a lengthy interview about current health, and six vials of blood for various tests. She's the right blood type, O, and all of the other test came back positive for compatibility as well. However, when she started thinking of all the things that could potentially go wrong, she was afraid of the operation.

A few weeks before Easter, Flar had a toenail removed that has always given him difficulties with in-grown pain. While he was recovering from this surgery, he had a gout attack, achilles tendonitis, and a general infection. His doctor ordered blood drawn to confirm the gout diagnosis, and when his kidney doctor saw the numbers, he called him in. Flar had a dangerously high level of potassium in his blood, and his creatinine level indicated that his kidney function had dropped below 10%. For the first time in Flar's life, he was forced to cancel plans (for a trip to Brazil) due to his health. The doctor prescribed sodium bicarb to lower his potassium, and a low potassium diet. He also made arrangements for Flar to start the dialysis process.

Flar's potassium level is back within normal range now. He's not allowed a host of very common foods, like tomatoes and orange juice and granola and milk and the list goes on. He tries to limit himself to 2 ounces of meat a day, and is getting his protein from american cheese and eggs now.

Flar has elected to begin with dialysis with peritoneal dialysis. This is done at home, in his case it will be the eight hours while he sleeps. A glucose fluid is pumped into and out of his peritoneal region (the inside of the abdomen, surrounding his organs) through a catheter. This is what the doctor inserted yesterday. The peritoneal region apparently has blood in it, and the process of pumping this fluid in and out will leach out what his kidneys are no longer filtering out. Once Flar's catheter is completely healed we will be trained in how to do the dialysis.

He has an appointment with the surgeon on the 21st. Until that time, he is not allowed to drive, so I will be his chauffeur. I expect he will want to try to work some next week, since he is CFO of his investment partnership, and Tuesday is the 15th. The surgeon expects to find him sufficiently healed, that he will be able to begin dialysis, so it looks like that will start sometime after the 21st.

There is a company that delivers the fluids directly to the home. I remember the boxes and boxes stacked up at Barbar and Bébé's house. The bags look a lot like the syrup bags that are delivered to restaurants for soda taps. The boxes are heavy duty. I think we still have some around here, used to store up clutter in corners of the house.

I'm pretty much rambling here, but I think that's the general picture of it. We're having a lazy rainy day at home, and now I should probably see about doing some house work.

Tags: ckd, flar

I meant to post this around 8, but phone calls, family, etc. happened. Flar is home and doing well. Longer update tomorrow.

Tags: flar, surgery

"Finishing Up and Doing Fine" from the desk attendant in the waiting room.

mood: happy Tags: flar, surgery