My daughters story

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MLS, try not to internalize it. Trust the docs and nurses to take care of your sweet girl. Consider yourself on a mini-vacation while they take care of her. Get yourself as much rest as you can and DON'T STRESS. Praying for you both!
 
hugs
buy some cheezy magazines and trashy novels to read while she sleeps to help with the stress.

She has many docs watching her now -you rest
 
I hope she starts to feel better quickly. The others are right, make sure you take care of yourself as well. Sorry she had to be admitted but I do hope they can sort things out. ((HUGS))
 
Hi
Sorry I've not been on to update but as u probably
Know whats it's like when u have a child in hospital.
Anyway Lucy still in hospital and is still on IV
Antibiotic , her temp is down to 38as of today
Which is lower than it had been, her crp was done
And is now 52 which is lower but not low enough.
Me I'm very tired and I'm the only one
Lucy will let stay with her, so hubby is coming to
Give me sometime to sleep in day ect,
Like now I've come home for a few hours before
It's bedtime when Lucy starts asking for me x
I just want to say thank you so much for asking about
Us it means so much x x x x
 
I am so sorry I missed that Lucy was in the hospital! Sending her hugs! and get well wishes. Take care of yourself too!. How are you doing besides being tired? Are you able to get any sleep in the hospital?
 
Hugs to both you and little Lucy. That CRP is off the charts! Wow. I'm sorry she is sick and needing to be inpatient, but glad she is where both of you can get help. I pray that you won't get sicker with all the stress.
 
Thinking of you, hope you don't have to stay in for too much longer. Hope things keep improving. Are they giving her anything other than the IV antibiotic?
 
I hope Lucy is doing better and that you have been able to get some rest! Sending hugs and support your way!!
 
Hi my dear forum friends
I really don't know where to start, I guess you
Will understand why I've not been around for about
A week or so. When you read update.
Well Lucy is doing much better and is now
On last day of oral antibiotics, the GI wants her to
Stay on 30mg of pred for another two weeks,
Before thinking of tapering, also there has been
Discussion to keep Lucy on EN so on the 15 th
April she will come in hospital for few days to
Have her Micky button put in.
As for me I haven't been too good I caught an infection
Which affected my heart while I was staying
With Lucy and collapsed, and all I can say is
I THANK GOD I am here and it happend in
The right place.
All this makes me thankful every morning
When i wake up
And get to see my beautiful children smile.
And I get to spend my time with my dear
Children
I don't know what life installed for me and
My family but I am determind to make the
Most of our situation .
My dear forum friends thank you so much
For your love, support and friendship towards
Me and my family.
I pray you are all doing well and your kiddos
Are doing good to.
Xxxx
 
Praying daily for you and Lucy, sorry you are having such a hard time with your own health but I'm certainly glad you were in a place to get help quickly.
((HUGS))
 
Was just thinking of you this morning! Sorry to hear you collapsed, that is a relief it happened where you could get help. Hope the infection is clearing up so your heart can fight back! Glad Lucy is a bit better - good luck for getting the mickey button!
 
Feeling rather down right now😭
Sat down today and it hit me
That what has happend these past few
Months and how our lives have changed
And maybe I won't get to see my beautiful
Grown up.
Sorry I'm really finding it hard right now
And can't talk to anyone else
 
Oh Honey. Words can't express the love I'm sending your way right now.

I say this with kid gloves on, have you talked to a therapist? Maybe there is someone out there who can support you who is removed from it all and isn't in the thick of things.

Hugs. :heart:

Kimberly
 
Sending love and hugs your way :ghug:

You are doing an amazing job. Hope you can get some time for yourself, even if it is just a few hour,s hope you can find a friend to talk to, but we are always here too xxx
 
My heart breaks for you and how you are feeling.
You have my support and will listen or talk any time. We are all here for you my dear.
 
MLS, don't despair! You will pull through this! I'm so glad Lucy is doing better! I'm sorry it hit you badly again. I've been worried about you since I heard Lucy is back in hospital. I know the stress is such a burden on your heart, and on your immune system. I will be so glad when you are both going strong again. Hang on sister and fight, fight for both of you!
 
Oh Mls...:ghug:

I am so sorry to hear about your health issues, what a frightening time for you all. I hope you are now on the better end of things. :heart:

You will get through these what I call black dog days hun. I know it is hard to imagine from where you are now but you will and you will see your beautiful children grow up. :)

You are grieving for a life lost Mum and it's only natural that the black dog will come calling but as you get stronger and Lucy does too those visits become less and less frequent until they almost disappear. He may continue to have the occasional visit but you will find that as time goes on he never quite catches up with the way he is right now. The stronger you become the more adept you are at outrunning him! :)

We are here for you Mls, any day, any time and that is true wonder of a world wide forum, there will always be someone waiting for you with a warm heart, a soft shoulder and plenty of squishy but gentle hugs. :hug:

:hang: Mum, you are doing fab, truly you are!

Dusty. xxx
 
Just wanted to let you know that I am praying for you and Lucy and thinking about you. You are such a strong woman and a great Mom to Lucy. Take care of yourself! You can get through all of this and get both of you on the road to recovery. Hugs! We are here for you.
 
Lucy has appointment today to discuss
Having the Micky fitted next week x
Any suggestions on questions that I should
Be asking? Any ideas and input greaful
 
1 Recovery time
2 Medicines- She can't have NSAIDS. So what can she use?
3 Make sure she has no crohn's in her stomach (maybe you should talk to the GI about that on)
4 How will this effect stomach issues. Will she be in more pain during virus or flares.
5 Warning signs of infection.


Let us know how it goes.
 
Re: FW's #2, our Peds GI was planning on going in with Jaedyn for surgery when she was going to get her Mickey to check Jae's stomach for signs of crohn's. I think the suggestions FW posted are very good

How did your meeting go? When will surgery be?
 
Morning all
Sorry I didn't update yesterday but it was along day
And to be honest wasn't a good day for me( health wise)

Anyway we spoke about Lucy having Micky button fitted
Which will be next week, she will go into hospital on 15th

And will have it fitted on the 16 th April I forgot to ask how long
It will take (scatter brain) .

The GI will be attending on the surgery to check
For crohns in stomach but he said it should be ok.

I thought that the G-tube would be fitted first that was
My understanding from lAst time

But they have decided to fit it all in one procedure
They think its better for Lucy as is it is very stressful

For her and don't want to put her under general
To many times.

Lucy hasn't put any weight on since EN she is still
Struggling even being on steroids

I asked why this was and he said it because she isn't
Absorbing calories ect.

GI wants us to start tapering the steroid on Friday
5mg a week I'm abit worried.

Any suggestions on what I should be looking for
While tapering, is it such agood idea just before surgery ?

All your views and thoughts welcome xx
:ghug:
 
It will be fine.
I noticed with Grace the first 2-3 days after each tapper seemed to start a mini flare.
Never lasted longer and wasn't as bad as what she had been dealing with.
We decided to do tappers on Monday so it wouldn't interfere with the week-ends.


HUGS
 
1200-1300 cals a day.

Grace is holding her weight. She is even kind of chunky now. I love it. Also her GP wants her on the heavier side if she gets really ill, she'll have a weight to lose.

What's Lucy's maintenance medicine?
 
Lucy's weight is 11kg which is 24lb
We haven't got maintance med yet
We will be discussing it after mickey
Button in place, but to be honest I'm scared
Of those strong drugs for lucy x
 
I don't blame your fear on the big drugs. I'm in the same boat.
BUT once you see her run and p[lay and eat like a soon to be four year old should you'll be happy ( well maybe more like relieved) with the choice. I bet you will also start to improve in health too. It's NEVER easy is it. HUGS
 
Ya, Grace should be at 120 but the last few days I can't get her past 90ml an hour.

When is Lucy's b-day?
 
Yeah your right
Unfortunately my health ain't gona get better
This heart failure only gets worse eventually
But to see Lucy be stronger than she is
And be a a normal child ( I wish ) x
 
The thought of the big drugs is worse than the reality - if that makes sense but I know how scary it is. Allowing Lucy to go on infliximab was one of the hardest things we ever had to do .... But for now I am glad she is on it because it is the only med apart from prednisone that has helped her symptoms. Hang in there mls the will find something that works soon. On diagnosis Lucy was only 9 kgs she is now a whopping 14 kgs so it does get better.
 
MLS,
Keeping you in our prayers as well!. Do they think the heart failure can stabilize or get better? Praying for good things for both of you!!!!!
 
Kimmidwife
With cardiomyopathy it won't get better
Was told it only gets worse
And causes other problems with it
Like now I have been put on another
Medcine(water tablet) cos my body is
Absorbing water and has made my legs
Feet and stomach swell. But who knows what
Life brings you from day to day .
Thanks for asking kimmidwife x
How's your daughter doing ?
 
MLS, don't believe that you won't get better. I've had patients who've had cardiomyopathy living good lives and much better than when they were first diagnosed. Yours is likely due to all the stress, but if your doc isn't giving you a good prognosis, I think you should get a second opinion! You deserve a doctor who believes he can help you. If he doesn't think he can help you, then he probably can't. Find the one who can! I am praying for healing for both you and little Lucy! There is hope. I've seen two of my daughters healed of seizures and one miraculously healed of scoliosis! I'm praying now for Jaedyn's healing of her Crohn's. There is no reason for me to believe that God would do otherwise. Hang onto hope, dear friend!
 
Am joining you with Ben and Jerry's!! Halfbaked! Yum. Goodluck tomorrow, will be thinking of you xxx :ghug:
 
Move over on the couch ladies.:cool2:
:ghug:I'll be partaking in the ice cream too.


I'll be thinking of you both tomorrow.
 
I'll bring my lactaid pills and help - love Ben and Jerry's - Good luck tomorrow, will be thinking of you, update when you can
 
Good luck for tomorrow.
I had to look up what a ben and jerrys was.
Had never heard of it... it sound delicious.
 
sorry I missed the ice cream fest. I'm thinking of your little one as she goes into the hospital tomorrow. <<<Hugs>>> for both of you.
 
Update
Where at home waiting for a call from bed
Manager to go in to hospital with Lucy.
She will have surgery for mickey button done
Tomorrow 16th as long as all bloods
Come back ok.
Thanks to you all for the love an support
This is a fab place x
 
Thinking of you and Lucy. I really did share in your Ben and Jerry's. Couldn't stop thinking about ice cream after reading your post, went to the store and got ice cream, bananas, toppings and whip cream and we had banana splits.
 
Heading back to hospital in few mins
Lucy is scheduled for mickey button surgery
Around4.30 pm
I'm hoping the sedation they give her is not
The same one as last time (pre med)
Will try and update u later x
 
I would ask to speak to the anesthesiologist directly. A cannot tolerate Demerol and I always specifically ask that she not receive it. Hope the procedure goes well!
 
I hope all is well. I don't know what time it is there, but it is 9:03 am here right now. Is it 4:30 pm there yet? I don't remember where you are :(. I'm sure all will go well. Tell your daughter we're all routing for her!
 
Morning everyone
Sorry for not updating sooner
Anyway Tuesday evening Lucy went down
To have her mickey button fitted.
Everything went well.
She was in abit of pain but with pain med
She slept comfy all night.
Yesterday she was sat up playing abit x
The only thing that is bothering her is when
I change her and she sees the mickey button
She starts screaming an tells me take it off.
( she has problems with new things)
But hopefully when she relises that she doesn't
Have to have NG tube and that mickey button
Is feeding her I'm sure she will get used to it.
 
Lucy is tapering down to 20 mg today
For pred shofar so good.
Hoping she will be home for the weekend
After having her mickey fitted.
We see the dietian today as they want to
Up her calories to put her weight up.
 
Sorry I have missed all this Mls...:ghug:

It is good to hear that all went well, bless her...:Karl:

Any news on getting home for weekend?

Sending loads and loads and loads of love and luck your way!

Dusty. xxx
 
I'm glad to read that she is starting to adjust. I'm not sure what a "Tubey Bear" is, but I hope it helps... I'm sorry she doesn't like it.
 
Hi MLS,
I am just catching up. I am glad the Mickey button placement went smoothly. It does take some time for the little ones to adjust nut hopefully she is feeling better about it. I am surprised your hospital did not offer for her to meet with child life beforehand so they could explain it to her and show her what should happen. Anyway, hopefully you guys are home and doing better.
 
I've been away and just caught up on the thread, so glad you all have made it home and she is doing better. I do hope she comes around to the mickey button and it provides her some relief and the ability to put on some weight. ((HUGS))
 
Trying to catch up on how everyone is doing, glad it all went and hope she gets "used" to it quickly and starts gaining weight.
 
MLS hoping you get the care and treatment you need to get that heart of yours feeling well. Sending thoughts and prayers your way that you are feeling better quickly. Wish we could come take care of you for a while so you could get some rest.
 
Sorry I've not been around much
Things at this moment are very stressful
And complicated, which I'm going to be
Under going tests. Depending the results
Will depend treatment. I may not be around
Much in next few weeks .
Thank you everything all of you have done
For me and Lucy x
 
Sending hugs and support your way, MLS. I hope testing goes well and they find a good treatment for you.
 

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