We have been to birmingham today to see Hollys consultant
We asked for the truth and we got it, and now I wish I had never asked.
First off though, the check ups went great. Her sats were at 90% which are FAB. She is now 22lb 13oz so is no longer teeny just small… LOL
Then we asked…. What are the plans for the future???
There is none. There will be no repair done to the hole because it 100% can NOT be repaired. They will only do palliative care now. They will only do something if she needs it and then its only to make things comfortable for her
I then asked …. What are the long term effects of not being able to do the repair??
The answer…. The consultant will be really happy if she lives to 30. He obviously can’t guarentee she will even get there. It all depends up on the person, some are stronger and some are not. There was a worst case senario of reaching her teens
Me and Carl are devastated and will prolly spend most of the night in each others arms sobbing. I know 30 seems years away but at this moment in time it feels like tomorrow. At least I don’t feel guilty now about the respite. We really do deserve to be there
Oh Ril, I'm totally heart broken for you. Please don't forget that medical care advances all the time though and what can't be done today might be able to be done in a few years time - and in 30 years who knows what will be possible.
On a brighter note she is obviously doing really well and is clearly a strong little lady! I guess this teaches us all to enjoy every moment we have with our precious children.
I can't imagine how you must be feeling, I just wanted to let you know I'm thinking of you and your family. Holly has come through so much already, I know you'll find strength through her, she's a tough cookie.
Oh Rilly I'm so sorry for you all, you must feel so devastated. Holly is such a little fighter and she;s growing so well now. She is a strong little girl with a very loving family so just try and stay strong for each other. Love and hugs to you all and an extra big cuddle for Holly xxx
I dont know what I can say that is different from everyone else. She is a little fighter and you should be very proud of her. Like everyone says medical science changes all the time. Thinking of you all xx
Ahhh Rily, am so sory to hear this news. It must be devestating for you and Carl. To se Holy so beautiful and full of life, it's hard to imagine her being so porly. I suppose all you and your family can do is what you do now, love her and spend as much time enjoying her as possible. Lots of love sweety, Lucy x
Post by pinkshell1110 on Feb 22, 2008 22:08:28 GMT
awww rilly i am so sorry to hear this devastating news.Holly is such a little fighter and she has come so far,stay strong hunni,and dont forget we are all here for you and your family if you need us.take care babes lots n lots n lots n lots of loves,cuddles n hugs shell,charlie and jasmin xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Hi Rilly that is really terrible news, lets hope a medical break through happens real soon. You have such a lovely close family and hopefully you will just enjoy each day as it comes, I cannot imagine how you and Carl are feeling, sending you love and extra special hugs. gx
I have taken it pretty hard TBH. She is such a sweet little thing and life is so unfair.
from what the doc was saying there was no hope at all. He never even suggested anything hopeful apart from maybe she will live to 30. They have never done a heart transplant on the NHS for anyone with Downs.
Just got to wait and see now
Thank you for the hugs, they will be greatly appreciated in the next few weeks while me and Carl adjust to it all.
Awww Rilith, I am sooo sorry you are having to go through this right now, I cant even begin to imagine what you and carl are going through. Just know that we are all here for you if you need to rant or vent your worries, big hugs and kisses from Shirley, Stephen and Grace xxxxxxxxx
Post by pinkshell1110 on Feb 23, 2008 11:16:04 GMT
rilly i am sure i read somewhere or heard that things have changed regarding heart transplants and DS,i think it was at Great Ormond Street lots of hugs babe shell,charlie and jasmin xxxxxxxxxxxxxxxxxx
Post by tantalizintina on Feb 23, 2008 12:14:05 GMT
Rilith i'm so sorry 2 hear that news, u must b devastated, life IS cruel.. Things change as time goes by... they cant help her now but i'm sure in the future they will come up with somethin 2 help holly... hold on to that huni... it may help x
If they close the AVSD it will create too much pressure and will pump the blood too fast and flood the lungs with blood. They can't even do a partial repair because of this extra complication they found when they went in to do the repair. Its something to do with the Fallots and the right ventricle not being the right size
I didn't need to ask about the transplant. The doc said that its not that they don't do transplants of patients with Downs because of the downs in a discrimiation sense, its down to the fact that things can be more complicated on someone with Downs. The immune system can work differently, for example.
If we had the funding we could try privately, they will do anything as long as you can pay for it. But it costs £250, 000 or something like that.
As for a second opinion, after what happened before the doc has always been totally bhonest with us. He owes us that, and I do trust him. They will have discussed it in a panel of surgeons, especially as they recorded the "Complication" as they put it. Holly has prolly been discussed all over
aww hun wud holly b quite poorly prob stupid Q bt dnt no u al yet. what do the dsa do charity work 4 would they nt b able to help in some way if i had the cash ud get it i cnt imagine hw upset u r bird
Post by pinkshell1110 on Feb 23, 2008 23:44:52 GMT
rilly dont want to bombard you with info but there is a little info on DHG website about heart transplants and DS, and some news reports on the BBC website take care hun,lots of love n hugs shell,charlie and jasmin xxxxxxxxxxxxxxxxxxxxxx
(I just typed a long reply then Caleb deleted it!) It's just so horrifically sad Ril, so much much much love to you and your family. To be honest none of us know how long we will have with our children - I kow it's morbid but one of the little girls in our special needs group died 2 weeks ago for no reason whatsoever! Horridly tragic. I know I am guilty of planning to far ahead and not enjoying NOW enough so at least you can concentrate on that and who knows what the future holds?! My portage lady always says that any info on DS is only valid for 5 years as medical and therapy knowledge is moving so fast. It's a long way til her teens and it sounds like you have a good team of medical professionals. She's strong, healthy and wonderful and you can enjoy every precious moment - what the future holds none of us know and you can and will deal with it later. She's the luckiest little girl in the world to have you as her Mum and be surrounded by a loving family.
I just wanted to say how sorry i am to hear your news,Our children are our world and to hear something like that must be devastating,but i have to agree with other replies that medical advancements happen all the time and Hollys only little so i would have thought they would be able to help her when shes older.
Shes been through so much and she is a fighter and deserves life so much,to think that shes come from "That" photo in your therapy page when she had her op to that smiley lil girl in your sig picture makes me believe that she wont ever give up.
Sending all our love and hugs to you and your family. Heather,David,Joshua and Aaliyah.xxxx
You can only but hope, without hope there is no joy.
I am feeling a little better today actually, Don't know if its denial or the realisation of life is for today. I am going to make Hollys life the best that she could have, how ever long she is with us, whether its another 15 years or 50 !!
Thank you soooooo much for all your positive words, and I will need you to remind me of them from time to time... LOL