Katie Update (from Carepage)

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Janet:

It's enlightening to read about how Katie seems to be going through what appears to be post-op depression -- just like adults. And we big folks think WE'RE so resilient!!

I'll be home a couple of weekends in late September. Would be great for John & me to meet y'all for lunch or an early dinner somewhere in Arlington... Will PM you. Maybe we can get several vr.com folks together -- Niki, maybe Tom, others?
 
I'm sure Katie's having some emotional repercussions from her ohs, but I think that this new awareness of loss is developmentally tied to her age - that was about the age my grandson began mourning the loss of his dog - they'd had to have him put down when Jack was 18 mos. because the dog (a huge mixed breed neurotic) bit him a couple of times. Jack would become weepy and sad and talk about Max the Dog and how he was a good dog etc. etc.

I think 4 - 5 is just about the age when kids become aware of loss and its permanence.

I'm certainly not trying to minimize the effects of the surgery, but I think that Katie (and you) is going through a typical stage for her age.

Good luck, and it sounds like she's doing really well. She's a hero for us all.
 
Janet, I'm glad katie is doing so well, but sad she is having such a tough time emotionally. It is just so sad what our kids have to go thru. I know alot of kids have melt downs or night mares after their surgery, I think some docs say it is a form of post traumatic stress. I sent you an email yesterday :eek:) as always Katie and you are in my prayers, it has just ben such a tough time in the CHDworld these days, I'm so glad katie is a "happy" story. we need that, love ya, Lyn www.caringbridge.org/nj/justinw
 
Janet is asking for prayers for Austin's parents and Tommy

Janet is asking for prayers for Austin's parents and Tommy

From Katie's Care Page

72 August 31, 2005 at 02:07 AM CDT
I know I am overdue for an update (my favorite opening line), and promise to do so soon. (Katie is doing well, though, for the most part. Back to being a little spitfire, except for some bouts of depression.) Tonight, though, I am asking for prayers for Mitch and Raquel, little Austin's parents. Austin earned his wings yesterday. Once again, I am broken-hearted. Austin's carepage: Austinsheart if you want to leave them a message of support. The lastest post from his carepage follows this post. Thank you all so much for all of the love and support you have shown us and continue to show us. Love, Janet P.S. Tommy continues to hold his own and appears to be stable, but please keep him in your prayers that he doesn't have to be listed for a long, long time. Many hugs. J.
 
You realize............

You realize............

that this group has the ability to reduce me to tears.............sigh! I was really feeling down in the dumps last night for obvious reasons, so I went back and read this entire thread.........yep, I think it took me about two hours. While I don't think it was too therapeutic to go back and relive all of those ups and downs, it was VERY therapeutic to read all of the posts from you guys. I really didn't get to savor and appreciate them on those few occasions that I got to check in while we were on our little surgical adventure. "Thank you" and "I am so touched" seem so inadequate. For once, I am at a loss for words. I really do want to print these out someday soon for the lioness to read one day..............especially right after she gives me some snotty comment years down the road about my looking so old and gray......... :D :D heehee! For lack of anything more eloquent, I do truly thank you all............for the support, the compassion, the worry, the cheers, and the prayers............ for Tommy, for Jerra, for Evyn and for Austin, but especially for the Katielion. I know in MY heart that y'all are part of the very reason why she is here with me today...........that and she is a little spitfire.

Welllllllllll.......we went to Katie's orientation for pre-K. Lord help them as I truly don't think they know what they are in for..........sigh! There we were sitting in the front row of the audience, listening to the director go over all the rules and regulations, yada, yada, yada, when the next thing I know, Katie has bolted out of her seat, went up and tugged on the director's skirt, and asked her, "When is it MY turn to talk?" :eek: Sheesh! You'd think she was running for office...... I wonder if they have an alternative school for pre-K?? She is only going to go two days a week - Tuesdays and Thursdays, so at least that gives the poor teacher a day off to recuperate............so maybe they won't kick us out before Christmas............

Oh, and Friend died yesterday (her Betta fish). Damn fish sure didn't have a good sense of timing. I am really not surprised, though, as Katie would feed him two and three times a day. Sometimes you couldn't even see the poor little fish from all of the food debris in the water. We would religiously change the water, but then Katie would just feed him again. Anyway, we had the expected meltdown that would periodically subside. Katie gave me the news when I got home from work. I glared at Don (thinking why didn't he just go buy another fish) until Katie informed me that she was the one who found him and, of course, had to simulate his "swimming" upside down (picture Katie, arms down by her side with little fin hands sticking out, twisting so her belly could be up in the air :D I had to try really hard to keep a straight face on that one!) When I asked if they had buried Friend, Katie said they had, that they had given him a "burial at sea." She thought that was a good thing, so Friend could swim, swim, swim, down through all of the pipes to the lake. He would like that....................somehow or other, I don't think she has quite grasped this "death" thing, but maybe that is a good thing. (I seriously suspect that my husband was a snake oil peddler in his former life.) Today she cried again about Friend, but for a much shorter period of time...........so maybe we are getting there...........

Next blood draw is Friday, so keep your fingers and toes crossed, and prayers always appreciated. I am still hoping that the paperwork goes through for that blasted home tester. Don takes her to Toys R US after every blood draw and that is getting pretty expensive........course that is not the main reason I want a home tester, but if we get any more toys, Don and I are going to have to move out and give Katie our room.

Duh.........now I have forgotten all the things I was going to respond to...........hmmmm. Don't think my brain has recuperated yet. But, yes, Marsha and Niki, let's DO get together sometime soon. It has almost been a year, and I would love to see y'all again face-to'face. Don't be shocked when you see that I have aged ten years in the last one, though........last three months reallly. Wendy, I am so relieved that Andrew is home and doing well. I still shiver when I read that newspaper story. Lyn, I want my cartwheel. I need it and I deserve it. :D Yes, I read your post, but I put off responding because I knew I would write a book........and then never got around to it.............you know how that goes.............but I love you. Got to catch up with Justin soon.........is he a senior this year? Lord help ya if he is. Mary, I know this is kind of personal, but could you check my butt to see if my head is still deposited up in there somewhere? I can't wait to meet you. (I know you feel likewise.........heehee. Probably can't wait to unload my a*s!) December, right? Georgia, thank you for your insight. I hope you are right. Emma, don't sweat it. Believe me, that little imp got a ton of stuff in the hospital - we are so blessed. I am just so sorry that we didn't get to meet you face-to-face. I am glad that Chloe had a fab time at DW and that y'all got home safe and sound before poopoo hit the fan over here. I'll PM you in a day or two with my addy, if you really want to but don't feel obligated, please, - a day or two because I am going to ..........well, I was going to say "drag my mangy butt to bed" but Mary still has it and she swears it is not mangy. HUgs to you both. Gina, I am so sorry that you have been sick. Hope you are on the mend soon. Oh, and Katie is working on a special thank you gift for you and Chris..........heehee! HOld on to it as it could be worth mega bucks one day when she runs for President (of something, anyway.........probably not the humane society, though, after her blatant fish abuse of Friend). Karlynn, the dragon? Is alive and doing very, very well..............too well, much to my chagrin. That thing molts like every other day (and eats his shed skin..........YUKKKKKK!) because he is growing so fast. If he keeps growing at the current rate, we will be giving dragon rides around the neighborhood this summer. :D And Phyllis, you hold a very dear place in my heart. I am overwhelmed by your constant, 24/7 support...........and you know what I was thinking? Katie was just cleared to fly, albeit with oxygen, but she can now fly for the first time in her life, so you just might find a little box on your doorstep this summer.....say, about a cubic yard in shape.........heehee! Ya know Katie does love the beach???? :D :D J/K, but I do thank you so much. YOUR heart has got to be the size of Texas.

I will most likely stop posting in this thread soon (after Friday's INR check, though), as it has got to stop sometime (please don't delete, PHyllis, as I still need to print it out), but I just had to make sure that this one put the "sex thread" to shame....... :D

Much love to you all. I promise not to be so scarce (it feels good to be posting again - you guys really ARE addicting, you know?), and I will definitely update on Friday's INR check. Many hugs. J.

Many hugs. J.
 
Good morning Janet- your posts always start the day with a smile! Good luck on Friday and we hope you get your home testing kit soon. Oh, and by the way- Katie and all of you are welcome on our doorstep any time- the box of sand toys is always waiting! :)
 
*chuckles*

And people tell me MY posts are sometimes long and go 'on and on and on and on' ;).

Good to see you posting again, Janet ... and good to know that Katie seems to be back to her own self ... definitely excellent news!

BTW, not sure if you got around to seeing it, but check out the "Baby with HLHS" post that I started a while ago. I updated it earlier this week ... as CMA posted about his daughter. Turns out, they are in Texas, too....

*sighs*

Sure wish I had the time/vacation/money to be in Texas when ya'll meet again..... Better stop there...heh.


Cort, "Mr Road Trip" / soon2be ex-"Mr MC", 31swm/pig valve/pacer
MCfamily.models.HO.chdQB = http://www.chevyasylum.com/cort/
MC Guide = http://www.chevyasylum.com/mcspotter/main.html
"Something's haunting you" ... Marty Robbins ... 'Some Memories Just Won't Die'
 
Hey Janet - good to hear you sounding more like your old self..... and wonderful to hear Katie is still her fiesty - and highly imaginative - self! :) You should really pitch a TV show "The Wonderful Adventures of Katie Lionheart". I have no doubt it would be a winner!! :D

Keeping you all in my thoughts,
Anna : )
 
knightfan2691 said:
*chuckles*

And people tell me MY posts are sometimes long and go 'on and on and on and on' ;).


:D :D And aren't you glad I was at a loss for words? heehee!

knightfan2691 said:
*
Sure wish I had the time/vacation/money to be in Texas when ya'll meet again..... Better stop there...heh.

Awwwww, shoot, Cort, I wish you were going to be here, too. I'm still sorry we missed you on the way up to Michigan. I'm sure Don is going to drag us up to Illinois again, though, sometime in the next year. Maybe we can all hook up then. Many hugs and thanks again for everything. J.
 
Abbanabba said:
Hey Janet - good to hear you sounding more like your old self..... and wonderful to hear Katie is still her fiesty - and highly imaginative - self! :) You should really pitch a TV show "The Wonderful Adventures of Katie Lionheart". I have no doubt it would be a winner!! :D

Keeping you all in my thoughts,
Anna : )

Thanks, Anna. We have missed you, too! I do hope that you haven't been playing with any more knives while we have been out of commission. :D

Many hugs. J.
 
Janet,

You were at a loss for words for that post?

*shakes head in disbelief*

Aye.

And, no worries about missing me on your way to MI. I understand you had other things on your mind then. BUT...if you ever do get back to IL, you better let me know!
 
Last update on this thread..........

Last update on this thread..........

as I think Phyllis is the only one still reading it regularly...........heehee! :D Thank you Phyllis! BTW, when you get a chance, can you PM me your snailmail address? Katie has finally finished your thank you "note." Gina, if you are out there, I need yours too, please.

Getting our INR check last FRiday was a HORRIBLE, very STUUU-PID experience. Since Katie was not seeing the card, just getting an INR check, Don didn't take her to Cook's - our local children's hospital in Fort Worth. They referred us to a clinic here in Arlington. NEVER, ever will we go there again! The tech, obviously, did not have much experience with hard sticks, even though Don warned them Katie was particularly difficult. Don said that she stuck her three times in her right arm - the third time, she was digging and poking the needle around. Katie is screaming by that point. Don told her to stop, but she didn't, so he had to physically put his hand on her arm to make her stop. He was about to bundle Katie up and just take her to Cook's anyway, when the tech's supervisor came in and requested that she get one try. She went to the left arm and got it first poke..............So WHY wasn't she brought in in the first place when we told the tech Katie was a hard stick??? ARGHHHH! All I can say is that it is very good I wasn't there as I would probably have an assault charge filed against me by now.

Katie's arm was swollen and is black and blue over a four inch span on her right arm. It was still swollen by the time I got home from work. We were debating on whether we should take her to the ER to have her checked, but, fortunately for us, our next door neighbor is a retired RN. She looked at it, told us to put ice on it,and if the swelling didn't go down or we felt any unusual lumps or anything to take her in. The swelling did go down, but her arm still looks horrible. She says it doesn't hurt, though, and it didn't stop her from tubing with mom at the lake this weekend. Sure would have been nice to have my butt back...........sigh!

Anyway, Katie's INR was 2.5 again..............so consistent, yes! At least two times in a row. But I have to confess that I would like it a wee bit higher, so we have some room to play with if she gets sick or whatever!!! We may have to adjust her coumadin up slightly.

ON the way home from the lake, Don was grilling Trip on key political figures.......Kay Bailey, William Rehnquist (like a 12 year old knows who William Rehnquist is.....sheesh!), etc. Anyway, he got to George W. Bush. Trip said, "President." Then Katie's somewhat muttered insight, "Well, he's supposed to be dyin' so he can get his picture on a dollar bill............." :D :D (FYI: Just last week, Katie had wanted to know who all these people were on dollar bills and Don had explained about the "dead presidents" thing. Guess she took it to heart. )

Thanks again for checking in on us. Many, many hugs. Janet
 
Excuse me, Miss Janet.

I'm still reading everything you post!! :D :D :D

It seems that you need a home testing unit immediately! Is there any progress on getting one?

Your body part sitter,
Mary ;)
 
me too!! religiously read anything to do with Katie and thankgod constantly she came through so well!!

PM me your address as soon as you can please - want to get sending!

Love to you all
Emma
xxx
 
Janet:

Will Katie's school & teacher survive this year???? :D

Sounds like you can sure use a home tester. And, yes, I'd think it'd be better to be above 2.5. But at least Katie's been consistent for several tests, so you can probably get the doc to nudge up her Coumadin dosage a wee bit.

We do need to plan on a get-together. Where/when should we try to plan this for?
 
This thread is 18 PAGES!!! and you don't think everyone here rushes to check it as soon as a post is made?

I'm so happy to hear eveything is going so well now.
 
Janet who? Just kidding! I am a little jelous of your thread here But I will get over it. LOL!

Sorrry Katie had such a nasty experience with her last draw. Ugh! I must admit I don't miss them. Though we have had just as many pokes lately with Andrew's other issues of late.

Just wanted to chime in here and admit I read your posts as well! :D
 
Of course I'm still reading...

Of course I'm still reading...

In a related Bush story, my son in kindergarten was shown a weekly reader with George Washington on the left and George W. Bush on the right. The teacher asked if anyone knew who they were and my son piped up, " I don't know who the guy on the left is, but the one on the right is a BAD man!"

Kristi
mr
surgery soon?
 

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