Tuesday, January 5, 2010

The Long Road Home

We're home again after Kevin's second hospital stay in as many weeks. His fever is gone and he is more alert, but the pneumonia has taken its toll. His energy level is near nil and what's left is spent coughing.

He hasn't even asked about returning to school, one of the places he loves most.

While Kevin was in bed resting, I was working the phone, dealing with doctor's offices and medical supply companies. One particular piece of equipment has been prescribed to help loosen secretions in his lungs. It's a vest that vibrates. And it costs somewhere in the neighborhood of $16,000.

Next up, the insurance company ...

Ethel

Monday, January 4, 2010

Mountainbilly Winter, Day 435

Whaddya mean, there aren't 435 days in the year... or winter???

Oh.

Alas, it's the first Monday back in the real world in the middle of a deep freeze. Not the deepest freeze in the world, or the country, or even our neck of the woods, but still. My fingers are on the brink of freezer burn.

Monday mornings always come earlier than we'd like just because, and today we had a bonus greeting of no water in the bathroom. There's no hot water in the kitchen, either, but we DO have electricity. Thank goodness for that, as we can heat up the cold water that can be almost painfully chilling in the middle of summer.

At some point during this particularly nippy little spell of the past few days (the temp has dropped this morning from 10.5 to 9.9), I did think of leaving the faucets dripping. With Matthew here until last night, though, water was flowing steadily in one capacity or another, so I didn't give it any more thought... especially when I reminded myself that the drains froze last year when I responsibly left the water dripping in 4-degree temps as the other three mountainbillies frolicked in Texas weather for a week. That was a first. Fun, too.

After Randy and I played slightly wimpier versions of Ma and Pa Ingalls early this morning, heating water for his 'bath' (ha) before he enjoyed a heated car 70 miles to school, I spent the next hour filling containers of water. Just in case.

And the day is young.

We're supposedly in for more snow today/tonight. The high this week is Thursday (27!)... perfect for more snow.

Yep, back to the real world.

For real this time.

Lucy

Saturday, January 2, 2010

A New Year, Same Old Story ...

It's never a good sign when you're in the doctor's office for a follow-up and the doctor starts contemplating the need for an ambulance ride to the hospital.

Once we talked her down from the lights and sirens, we were ordered to go straight there. Do not pass go.

Kevin is getting respiratory support and we will likely be here for a couple days this time, until home health care can be set up.

Eh, sleep is overrated anyway.

We've already had a visitor. Tucker stopped by to say hi.

Tucker does his best to lift Kevin's spirits

On the upside, it's really cold outside (OK, not as cold as where Lucy is, but still ...), and it's mighty toasty in here.

Wheeeeee.

Ethel

Randy and the F Word

F-L-O-R-I-D-A. Randy’s already mentioned it (jokingly serious), and it’s just the second day of January.

He’s just grumpy because the mercury finally worked its way up to almost 14 degrees today, only to plummet again. The chill factor is in the double-digit negative numbers, and that’s all I need to know. It’s absolutely frigid, with no end to this nippy snap until some time after the week-long forecast. The big winds aren't even close to arriving yet. Happy global-warmilicious new year.

And on the second day of the new year, I’ve already given up trying to accomplish anything significant until our routine returns, hopefully on Monday. I will be breaking out the treadmill for sure, though, in an effort to stay warm if nothing else.

Yesterday, the first day of 2010, was Emma’s birthday. The baby in the family is now 11. She celebrated by staying with me upstairs for hours as I filed a gazillion papers... my feeble attempt to get ready for tax work.

Emma, birthday gal


Also yesterday, Katie sent a link to the site to order graduation announcements. From college. In FOUR MONTHS.

I procured a tiny spark of bravery after checking the link to see when Matthew will graduate with his Master's. No need to report that it's on the same day. He's graciously and eagerly offered to pass up his own stage time to attend Katie's graduation 'since I've already done it.' If they're at the same time, we may take him up on it.

Kevin is back in the hospital, but I’ll let Ethel report on that. It’s a bummer that he/they had to return, of course, but this will hopefully be a short stay.

MJ’s 22nd birthday is coming up on Friday, January 8. In MJ fashion, she would like only 3 things:

1. Votes for The Center for Courageous Kids in the Clorox Power a Bright Future program. The winner gets a $10,000 grant, and since MJ loves this camp, let's help celebrate her birthday in a big way by helping them to the top! You can vote daily through January 17.

2. Donations to FightSMA (Andrew's Buddies). You can click here to learn more. She's trying to raise $440, and as of today, she'd already accomplished $123 of that.

3. Cards, cards, and more cards! To send cards:

Easy eCard instructions -
1. Go here to create a card
2. Choose a card from the selection
3. On the next page, you have the option of using the default image, choosing from the ‘card’ gallery, or downloading a picture (one of your own or one from the internet)
4. The info you will need:
Patient’s first name (top line) - MJ
Patient’s full name - MJ Purk
Patient’s room number - T5121

That’s it - do as many as you can, and please pass the info on however you can!

NOTE: The cards are printed each weekday morning around 9-9:30. Any that haven't been received by then will be printed on the next 'print' day.

If you prefer, real cards can be mailed to:
Nationwide Children's Main Campus
c/o MJ Purk, Room T5121
700 Children's Drive
Columbus, OH 43205



It looks like my time on the computer (yes, my own computer) is about up. Matthew's been working on a football highlight DVD in his capacity as graduate assistant, and the Mac is definitely the way to go. This Mac.

So I'm off to see what needs to be done in the oven.

While it's on.

Lucy

Thursday, December 31, 2009

Adios, 2009.

Incredibly, 2009 is about to end.

I don't even remember most of 2009, but I'm ready to roll over the calendar.

Some folks are pondering the year's events and summing up the past 365 days, but I'm skipping that in favor of a final request for a few prayers:


For 'our' Kevin, that his fever go down and STAY down and that he regain some energy without having to return to the hospital. And for Ethel, that she is somehow able to get some sleep.

* * * * *

For MJ and Brenda, who have been in the hospital so long, they may be on the payroll by now. MJ is celebrating two birthdays this month - her angel sister Emma's 21st birthday on the 3rd, and her own (#22!) on the 8th. It's likely a sure thing that MJ will still be stuck in the hospital on her birthday, so please consider getting the new year off on the right foot and send birthday cards to her!!! This would make a TERRIFIC church and/or school and/or community and/or snow day project :)

To send cards:

Easy eCard instructions -
1. Go here to create a card
2. Choose a card from the selection
3. On the next page, you have the option of using the default image, choosing from the ‘card’ gallery, or downloading a picture (one of your own or one from the internet)
4. The info you will need:
Patient’s first name (top line) - MJ
Patient’s full name - MJ Purk
Patient’s room number - T5121

That’s it - do as many as you can, and please pass the info on however you can!

NOTE: The cards are printed each weekday morning around 9-9:30. Any that haven't been received by then will be printed on the next 'print' day.

If you prefer, real cards can be mailed to:
Nationwide Children's Main Campus
c/o MJ Purk, Room T5121
700 Children's Drive
Columbus, OH 43205

* * * * *

For the SMA researchers, that they find the missing links (including the necessary funding) that we in the SMA family need in order to squelch the devastation of SMA. They are SO CLOSE!!!

Finding a cure for SMA will also help 600 other diseases. If you haven't yet signed the Petition to Cure SMA, please make it one of the things you do to ring in the new year :)

* * * * *

For Jonah and his mama, Patrice (and dad, Matt). Jonah's doing fine at the moment, but the EB family lost a beautiful little gal, Leah, this morning. She'd had surgery yesterday to place a g-tube and to remove her teeth, which spell disaster for EB babies, and her mom posted that things had gone great. Patrice didn't know what happened but is understandably crushed.

Of course, prayers go to Leah's family (her parents are Meg and Jeff), but they are also needed by other families dealing with EB. Like Jonah and his mama, Patrice.

Ironically (or not), here is Patrice's post from the night before Leah's surgery:

UPDATE: Leah is in recovery and did well during surgery. I'll update more when I know. That's all I've got right now.

I've had a lot weighing on my heart lately, but didn't want to share until after Christmas as to keep the bummage to a minimum.

We've had two losses (that I know of) in the EB Community this month. One was a three month old baby with Junctional EB and the other was a six and a half year old little boy with Junctional EB. Baby L got a g-tube, developed an infection, and passed away in early December. The little boy, W, had been fighting severe Junctional EB for six years, and finally, his body just couldn't take it anymore. He died in his sleep on Christmas Eve. I can't tell you the sadness I've felt for their families, especially their mothers, whom I don't even know. And of course, I've had a certain amount of sadness over thoughts of losing Jonah. Maybe it's crazy to think of his death when he's doing so well. I don't know. I know I should focus on the positive, and I do most of the time, but sometimes this stuff - this cruel reality that is Junctional EB - just slaps you in the face. To think that he could be doing well now, but that we could lose him at six years old. I can't handle it. And I think about it. A lot. I just can't help it. And I cry and obsess and cry some more. And then I'm okay. And then I'm not. We were told that non-Herlitz could have a normal life span (with MANY difficulties and complications), but I think I only KNOW of two Junctional EB adults. To me, that just doesn't add up. Anyway, I was doing really well with all of it and then we lost L and W, and I'm in a low now... really struggling with focusing on the now rather than worrying about the what if.

And I guess the real reason I'm posting tonight is to ask for prayers for Leah and Tripp.

Leah (already with a trach) will be getting a g-tube and her teeth taken out tomorrow.

Tripp (already with a trach and g-tube) will be getting his teeth (ten in all I think) taken out on Thursday.

I hate what Courtney and Meg are having to go through. It is not fair that two such young, beautiful mothers have to deal with this. They are having to have their babies' teeth REMOVED because their teeth are tearing their mouths to pieces. That is so incredibly messed up. And please pray for Leah as she gets her g-tube. Thankfully she will not have to be intubated since she already has the trach, but please pray that she will resist infection while in the hospital.

Thank you for keeping all of our sweeties in your prayers. And if you are making any end of the year donations, please consider DebRA or the Epidermolysis Bullosa Medical Research Foundation. We are desperate for a cure! Please help if you can
.

While you're at it, please add some prayers for Tripp and his folks, Courtney and Randy, who no doubt heard about Leah earlier today.

* * * * *

For those in charge of making decisions regarding the country, that someone(s) with some sense be given an opportunity to USE it.

* * * * *

For all of you, for a happy, healthy, safe, and successful 2010. Thank you so much for hopping around or into the Suite. With one of us absolutely needing to shed some lard this year, there will be even more room for M&Ms. I mean, Suitemates.

Happy 2010!

Lucy

Wednesday, December 30, 2009

That THUD you heard...

... earlier this evening was my return to the real world.

After 3 wonderful days away with daughter Katie - gabbing, watching movies, catching up on Criminal Minds, eating just a bit of chocolate (I graciously indulged on Ethel's behalf during her stint in the hospital with Kevin), reclining, running some errands, and walking - yes, walking - in a nice park today - I have returned home to the two-legged guys in the family and the three hairballs.

It was wonderful to spend time alone with Katie, and it was wonderful to return home to Randy and Matthew. And to Emma, Kali, and Sami, two of whom thoughtfully puked in the house long enough before my arrival that Randy couldn't possibly wait for me to take care of it.

The remnants of the big snow, which fell 12 days ago, linger in a petrified capacity, and not only are we due for a wintry mix tonight and tomorrow, but the single-digit temps are ready to pounce just in time for Randy's return to school on Monday morning.

That will be his real-world jolt and another one for me.

Meanwhile, I hope Ethel is able to take a nap, as Kevin's fever flared up again after their return home this afternoon. I assured her I'd taken a few hits on the hips with some M&Ms in her honor, and if it'll take a few additional hips, er, hits to keep Kevin home, then I may have to procure another package.

Meanwhile, Part 2, I trust I'll be able to shake off my sugar high tomorrow and get back to work!

Or something.

Lucy



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