Katie Update (from Carepage)

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I am so delighted to hear that Katie is home, she has been in my thoughts and prayers, God is good.

Mic
 
So glad to hear that katie is running around already! I bet with Good Rest in her OWN bed, and Good home cooked food will have her bouncing off the walls befor you know it!

I hope you find the answers you need about the home testing kits and that you get approved for one real soon for katie!!

Take care, Thinking of Katie and her family always,
Diesel :D :D :D :D :D :D
 
From Katie's carepage

From Katie's carepage

It is with a very heavy heart that I pass on some very sad news. Our precious little Jerra is now an angel. I'm sitting here bawling like a baby..........I'm so glad no one else is up right now as I just can't face anyone at the moment. Please pray for the Hall family as they attempt to cope with this incredible loss.

Please also remember to keep our little valve buddy Tommy in your prayers. His body is truly doing an amazing job in compensating for the loss of that right ventricle. Please pray that he remains stable for a long, long time.

Katie is doing well. INR was 2.9 Wednesday, and we have our first real post-op checkup with the PC on Wednesday. Cross your fingers and toes - with or without purple nail polish - and throw in a few prayers for good measure that we get a thumbs up. I'm sure you all remember that one month post-op checkup last year when the bomb was dropped.............sigh!

If you are interested, Katie's UofM adventure pics are posted at Kodak:
http://www.kodakgallery.com/ShareLa...de=fromshare&Ux=1&UV=621422046373_62407963308

I think you will have to cut and paste this into your browser and then join to look at them (free to register). Let me know if it doesn't work.

No funnies tonight. Just too, too sad right now. Much love to all.
P.S. Tammy, I have been meaning to tell you. Katie picked out a book from the UofM bookcart. Angelina Ballerina - I immediately thought of Zoe and you and started bawling like a baby. I'm sure the bookcart volunteer thought I was a nutcase. Much love to all and thanks for checking in on us. Janet
 
So sorry to read about Jerra, Janet - our hearts and prayers go out to the Hall family.
The pictures are great, but the very best one is of our Katie going home!! By the way, Big Bird really does look scared to death of you. :D
All our continued best wishes for nothing but joy and good health.
Best wishes,
Phyllis and Dick
 
Janet,

I send my hugs and prayers out to you, Jerra's family and all the families and people who worked so hard for and loved Jerra. Things seemed so hopeful for the last couple of weeks. I guess Jerra did so well for awhile so everyone could remember her as a lively little girl instead of the still form on life support.

Please know that we are here for you when you feel like middle of the night company.
 
Happy to see Katie's photos

Happy to see Katie's photos

She looks great, particualrly when leaving!

Kristi
 
Janet, no words can express how sorry I am to hear about this precious little angel. God must have needed her in heaven. All my prayers go out to this family.

I am glad to hear Katie is doing better. I pray she just gets better everyday. Hugs are coming your way.
 
My heart is heavy thinking about Jerra's passing. It is a jolt that reminds me to never take anything for granted. Prayers continue for Katie and Tommy.
Mary
 
Janet:

When my family goes on its annual trip into the woods we leave as much of the world behind as possible, so I've been out of the forum-loop for a while. I'm so glad to see that Katie is finally home and your family can begin to adjust to whatever "normal" is now. You and yours have been and will continue to be in my thoughts and prayers.

All the best to you,

P. J.
 
Hi Janet

Hi Janet

Glad to see that you are posting again.
Hope that Katie is doing really well.
Sending you all our very best wishes
Ernie & Wendy
 
I'm sorry, I'm sorry...............

I'm sorry, I'm sorry...............

We really haven't fallen off the face of the earth (praying that New Orleans doesn't either), but I AM about to shove this PC off a cliff...........sigh! It actually appears to be functioning at the moment and our cable seems to be working (GASP!), so I am going to attempt another update..........tried several days ago, but it apparently went to cyberheaven.........and Gina, I apologize, I tried PMing you twice a few days ago - those got eaten, so then I tried e-mailing you. Dunno if you ever got that one or not. It was pretty cryptic at that point. But yes, we did get Kenny and Kendra's present, so thank them so much. I think we mentioned it somewhere on her carepage when we were still in Michigan. If you can get me an addy, we will get back to work on those thank you notes............which might go out at Christmas at the present rate that Katie is getting them "written." And Debora, yes, we got the pictures. Thank you so much. Bruna is such a cutie.

Katie is doing well, physically, for the most part. Her latest INR checks (two weeks apart now) have been 2.9; 3.4; 2.5.(yikes!), and we go again Friday. She is on 2mg a day of coumadin daily, so quite a bit of variance it seems (to me, anyway). I am so thankful for you guys and this forum. Her PC (new one) wanted to change her dosing to 2, 2, 1.5, etc., after her 3.4 reading. I finally got through Don's thick skull to leave it at 2 'cuz there was nothing wrong with a 3.4 reading, so we did and then got the 2.5 reading...........I realize that might have been a fluke reading (we will find out Friday, I guess), but what if it wasn't and we had lowered her dose down? We would probably ahve been lower than 2.5, survey says................

Ya know what, I am going to post this update in pieces, so if it gets eaten, then only part of it will............to be continued
 
Hey, it went through...........

Hey, it went through...........

and the puter still seems to be working..........I don't trust it for a moment, though. It's probably just trying to catch me with my guard down..........

Katie has gained back one pound of the four she lost. She still has little bitty bird legs, though. We were able to drop the aldactone altogether and the lasix down to once a day, so I think that has helped immensely. We are still battling to get a home test machine. Don's going to call tomorrow and see where we stand on that. Other than the pokes, Katie is feeling much better. She runs around with the best of them. The heat has been getting to her, but since we have been hitting over 100 for several days now, we are all wilting. She vacillates between bouts of depression (which concerns me some) and being a walking television commercial.

About every two or three days, Katie will have a complete meltdown.........sobbing to the point of not being able to catch her breath....and over really bizarre stuff............and they all have to do with loss. Our dog died last February. She was 16 years old, deaf, dumb, and blind (no she didn't seem to be in pain and could still somehow or other manage to catch a squirrel every now and then).............anyway, Katie was not particularly close to the dog as she was too old really to play with (not much fun for you to throw a ball, you go get it while the dog just lays there, throw it again, go get it again............well, y'all get the idea). Anyway, three times now Katie has sobbed over missing her poor Precious, she'll never get to see her again, I miss my doggie, etc..............and there is no consoling her. This goes on for an hour or so..........will stop for a while.........and then something, somehow will kick it all back off again. Then she has cried over a missing carebear.........one that had been MIA since last May..........again, uncontrollable sobbing. Then she broke down again over having to give up all of her stuffed animals.................well, no one has ever told her that she had to give up any of her stuffed animals, so I don't know where she got that one, but again, the tears flowed and no one could stop them even when we reassured her that she didn't have to give any of her stuffed animals away.................sheesh! I've read about depression after surgery, but how do you tackle it in a four year old? And, yes, we are looking at puppies, but I don't think that is going to cure the problem.........

Okay, enough dreary news...............when she's up, she's up. She is still performing and has made up some new songs (I'm sure variations of ones she has heard on tv). Her latest: "You've got me, I've got you. The two of us together there's nuthin' we CAN do." I've tried telling her that it should probably be "can't" but to no avail. The television commercials flow. She is a walking advertisement for Fruit Loops and Bounty paper towels. "I love cleaning my house with Bounty." Her latest feat is to throw KoolAid or whatever she is drinking on the floor, so she can grab her roll of Bounty towels and show how well they clean up the mess. "These Bounty towels will do the trick." I guess she would have made a good vacuum salesman way back when, 'cept she hasn't quite mastered getting all the KoolAid up. And her rock garden is really thriving as three of the rocks are now "growing good" (read that showing through the dirt).

We signed her up for Pre-K two days a week - starts after Labor Day (God, help them). Now she is busy doing her "homework" every night because "I have to learn my ABCs before first grade." Yeah, sweetheart, that would be a good idea! :D Course she already knows her ABCs, but she delights in saying them to show how well her homework has paid off. She wants to take dancing lessons, get a horse, and go live at the beach......guess I better keep buying those lottery tickets................sigh!

I had to laugh recently as we got one bill from Michigan - just the hospital one, mind you, as all the labs and tests and doctors and surgeons bills come separately.................for $187,000!!!! (It was actually 187something, but I forgot the exact amount!) You have to laugh...............oh, yeah, let me whip out my checkbook here! :D Actually, I'll let the insurance companies duke it out and then see what's left..........I imagine it will be a tad bit higher than the last one, but we have a 6K cap for out of pocket, so it shouldn't be too bad............course I'm sure some of those expenses will be deemed "medically unnecessary" like morphine, anesthesia, (I have told y'all about that one??), etc. :D

As for me, I've been swimming in schoolwork already and mounds of bills and insurance statements. Other than that, little Jerra's death really has taken a toll on me. I just find it really hard to laugh or smile as of late. There is another little two month old boy with heterotaxy and complex chds like Katie's. I have been following Austin since his birth and he is now dying. (Please pray for Austin and his parents.) They were recently told there was nothing more that could be done for him, so they just wait.......... Sometimes life is so sad........

Okay, this is getting really long. Guess I should really post this on Katie's carepage...............Can you tell I have missed you guys?

Thanks again for all of the love and support that you have shown the Katielion and me. I will have to get a couple of reams of paper and print all of these out someday soon.

Okay............here's hoping this goes through................much love. J.
 
Thanks for the update, Janet. I've continued to have the Katielion and you and the rest of your family in my prayers. It is so sad to hear that she has experienced the depression that so many of us have gone through. But hopefully she will come through it just as most of us do. We really do need to get together soon. If for no other reason than to lift each other up!

Love and hugs,
 
Janet, thanks so much for the update. There's not a day that goes by that Katielion, you and your family aren't thought of.

OHS depression and 4 year-olds has to be a very tough mix - particularly when Mommy is probably fighting the OHS depression too because of all you've been through. Take care of yourself. Just because you're the parent doesn't mean you are immune.

And how is the dragon????

We are battling with our insurance right now over the payment of a collegen patch used to fill the hole left by the larger-than-a-golfball parotid gland tumor (benign) that my husband had removed this year. They say it was an elective cosmetic component. Now my husband isn't vain in the slightest, but even he didn't like the idea of a large hole in his neck. I told him to tell them that if it slid down to his chest that then it would be cosmetic and he'd refund them the money they paid.

So yes, I can believe anything you say about insurance and unnecessary expenses.

I'm thinking that if you keep a video camera around that Bounty just might be able to fund Katie's college education.
 
Janet,
I'm soooo pleased to see you posting again - was only just speaking about you and Katie to Bev yesterday (you know - Lucys mum) and saying how pleased we were that Katie was doing so well. Bev is going to contact Katies surgeon soon about the possibility of Lucy having the same op - valve replacement and all.
Depression and OHS seem to go hand in hand - for parents as much as the patients I guess. I wrote to a lady on here just a day ago about how its affected me, and I know you must be suffering the same, if not worse than our brave Katielion! I think time and lots of cuddles and reassurances are going to help her a lot - perhaps counselling later will be good, but I'm sure you 'll know if and when thats needed. Make sure you take time to look after yourself too though!

Also, I have THE most massive apology to make - I found Katies present in my cupboard yesterday - somehow was CONVINCED i had posted it but obviously not and I am so so sorry - in amongst holiday, work, kids etc etc I just didnt and I apologise no end. Have now something to add to it to make it up to Katie if you would just PM me your home address now ?? - feels good to be able to ask that and send things to Katie at home now shes through her op so well! Am so sorry Katie - it WILL be made up to you!!

With lots of love and support - I'm here whenever you need me!
Emma and Chloe
xxx
 
Hi Janet,

Yes, I did get your email. I have been sick so I haven't done much acknowledging of anything. A couple of posts on VR.com and I am back to bed. :mad: :rolleyes:

Glad to hear "Katie stories". She is a hoot (and your descriptions of her are as well). Have you warned the preschool folks? :D :eek: :D

I will send you an address for Kenny & Kendra when I get my mind back. Glad you got their package. As I said, they weren't asking - just me.

I feel so badly for all who knew and loved Jerra. It must be tough to feel so good about Katie and then think of Jerra. I am sure God has his reasons but they are not always easy to understand. I see that Halle is doing well and am happy about her. I think God simply decided Jerra had had enough and she certainly went through a lifetime of struggle her last couple of weeks.

Hope your life is very "normal" for awhile. You all deserve that.
 
Janet,

I'm so glad to hear Katie is getting back to her old self, but I'm so sorry she is having the sadness/anxiety issues. I remember realizing at about the age of 5 that I would die someday. It really bothered me for awhile. I knew that people died, but I couldn't conceive of it happening to me. Maybe this is a maturation/developmental issue that is common to children Katie's age.

When we head to Texas, we are trying to arrange travel so we will be in your immediate neighborhood the first night. We plan to drive on to San Antonio the following morning. I know you are busy with school, but maybe you can meet us and let us treat you to dinner. Another possibility is getting carry out and eating it around the hotel pool so Katie can swim.

Your back end is still with me and in good shape. I take "it" along when I hit the Fitness Center and the recumbent bike seems to do the trick. :p :p :p
I'm starting a belly dancing class in about a week, so we'll see if "it" can keep up. :p :p :D :D :D I think it has enjoyed "its" recuperation in Missouri, but it looks like "it" has lost its tan. :( :( :( I would do anything for you Janet, but don't ask me to take "it" to a tanning booth! :eek: :eek: :eek:
(For any new members reading this, don't bother trying to follow this correspondence. :p :p :p )
Hugs to you all,
Mary
 
Good to hear from you Janet. I hope that Katie's sadder moments soon go away, but I got a kick out of her "cleaning" skills. Give a four year old a bottle of windex and a roll of paper towels and they are in heaven. Too bad we can't harness that energy to clean the whole house! :) I know she will enjoy pre-school and that they will enjoy her. Best wishes to all of you and I hope that your life calms down and gets back to normal (whatever normal is) soon.
Phyllis
 
Hi ya Janet!

Hi ya Janet!

I just got home last night and am wading through my emails and had to see how YOU are doing!

I am so glad that Katie is healing so well.The emotional part has got to be hard. This is a lot for both of you to have gone through. Worry itself is very draining. Not to mention all the physical stuff your body goes through, lack of sleep, trauma. They are kidding about resting in the hospital aren't they?

I had to chuckle about the Bounty towels. :D

Pree school will be a nice diversion for her. We actually have a HLHS child at ours but I have yet to meet her. i am planning on it though.

Well it was just good to hear about Katie being home and doing so well. Keeping you all in my prayers for all to continue on and keep getting better. My mind is still a bit fuzzy so if I don't make sense I am sure you understand.

heart hugs,
Wendy
 

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