We were told today that William is too unstable to go home for the time being. The team don't think that he is actually clearing his bugs that are escaping from his gut. Sometimes we get one in a blood test, sometimes another and occasionally none but they think they are all there as his intestines are literally leaking their contents into the blood. We have tried every available method to control this. William was allergic to the only one that worked! Although we remain hopeful that we can get some normality with Hope and Ellie soon, there is a strong chance that he will not become well enough to go home until he has had his transplant.
The lovely Emily has written about the issue of children's transplantation and organ donation on her blog and is encouraging debate (you have to look to the post below her lovely wedding photos from this time last year - those smiles show what a transplant can do to a family :-) ) I would be interested in your thoughts. If you were faced with the unthinkable, would you give your child's organs for transplant? What about if it were your child who needed a transplant? The lovely Pauline, from the Donor Family Network told me how positive it can be for people to donate their loved one's organs - to be able to say yes to someone like us. That is what we are waiting for, someone to say yes.
This is what I posted in respsone to Em'sblog:
I think this is something that needs a lot of awareness to be raised. If families could bear to think of the unthinkable for a minute and prepare their thoughts and ideas then it would be easier for them if that ever happened to them.
I really struggle with the notion that I am waiting for someone elses child to die in such a tragic and sudden way but there are two children in this hospital at the moment, both of whom desperately need their transplant. At every ward round we are being told by doctors that we are at the end of the road. All options are exhausted. There is a high chance that William will never now be stable enough to go home until he has had his transplant. We were told that only 25 children donate organs on average each year. We were also told that there are about 3 'events' a year that could lead to William's transplant and, of course, he may not be the only child waiting for the same organ on that same day.
My thanks go to Ubaids' lovely parents for being brave enough to highlight this on our behalf.
11 comments:
Sarah, I know that this is a really, really difficult time for you and all of your family. I know that it would be a terrible thing for a family to loose their child but I think if it were me, I would find it comforing to know that a part of my child lived on and everyday gave another family joy.
Never give up hope, my Uncle was told that my Auntie needed a lier to become available in a matter of hours or it would be too late. That was over a decade ago and wonderfully for us she did have the transplant and she is well and even went on to have a healthy baby 3 years ago.
Sarah, I am so so sorry to hear that William may not be able to go home until he gets his transplant. That must be a horribly daunting thought for both you and Paul, and for William himself, as well, of course, as for Hope and Ellie.
I am praying that William will improve and find a way of fighting these bugs and get home before his transplant. If he can't, then I know that both you and he will cope with that as incredibly as you always do, and make things as enjoyable and stimulating for him as you can.
I don't know if it would help, but you can always ring me if you feel like a chat to someone. If you don't want/need to, then that's fine, of course, but the offer is there if you're feeling lonely sometime.
Big hugs hunny. Am praying hard.
Love,
Becky xx
Forgot to add:
Regarding the organ donation question, yes, I would say yes. It's not something I want to even contemplate, and something I hope and pray I will never have to say yes to, but there is no way I could be praying for another parent to make that decision to allow other children to live through the loss of their own child, (for William and others) if I wasn't prepared to make the same decision myself.
With the kids having CF, if a cure isn't found in time, one or both of my kids could find themselves on a transplant waiting list themselves, and again, I can't be willing to accept what I wouldn't give back.
Which is why I am a registered organ donor myself.
Becky xx
When my dad passed away I knew that he had moved on somewhere better and his body was just left behind - he so wanted to be a donor he spent his life helping others (he was a coastguard and a samaritan) but as he was riddled with cancer at the end this was not possible. If it was one of my children, I hope I would say yes so that someone else could live...they would be in a better place. Things have gone very pear shaped for us, Daisy starts TPN tomorrow. We are currently in GOS - phone nicked last week so have lost all numbers, text me with yours...My blog is at www.suburbansuperwoman.blogspot.com
hugs to all
Steph
xxxxx
Hi Sarah, I don't know what its like to have to make that decision, I myself am signed up as a organ donor (and all my family know my wishes) but I think I would find some comfort in knowing my child has given another child a second chance at life when they were unable to have that chance themselves. I also believe if you would accept a transplant if you needed it, then you should be willing to give when the time comes (if its in the right circumstances). When my great nan died (I was young but remember it) my grandpa agreed to donate her corneas, and we all took comfort in the fact that 2 people would be able to see because of her.
Re William, I'm really sorry to hear they don't think he will be able to go home before he gets his transplant. We will try and get as much support to you all as possible and if there is anything we can ever do (for you, william, paul, hope or ellie) please do let us know
lots of love
vikki
Sarah,
Just saw this poem on another blog, and thought of you and William ..
Footprints for Children
The Lord will always walk with you
along life's blessed beach,
His footprints there beside your own,
always within reach.
Two sets of footprints, side-by-side,
from dawn to setting sun.
Yet there may come a day, my child,
When you'll see only one.
But do not think the Lord has left you--
Nothing could be more wrong.
It's just that He has picked you up,
to carry you along.
Author Unknown
Love and hugs,
Becky xx
Hello. Jj here. Rachel Wood's Hubby. Thinking of you guys today. Love and prayers ( I know Rachel misses you heaps) Jjx
Hi Sarah, I know this is a really, really tough time for all of you, and just wanted to say that we're all thinking of you loads. Alex loved the picnic in Battersea, and kept saying "Lilliam is my friend" all evening. I hope it's not too long until we can have another one. Lots of love to you all.
I came across your blog by chance and have been faithfully trying to keep up on how William is doing. He is just so darn cute! I know that times are difficult right now and I just wnated to let you know that I am thinking of you and praying that he gets his transplant soon.
Sarah, When Max had his 1st operation he was only given an 80% chance of survival Ben and I immediately said 'If he doesn't make it we want to donate his organs' We didn't have to discuss it we both knew it was exactly what we would want to happen. Lucky he did pull through and is doing well at the moment, but he will have to have a heart transplant in the future.
I know it's hard to think of where the organs come from but it would have given me great comfort to know another child was able to live when mine could not be saved.
I hope this helps
Holly
xxx
I get the impression that you feel guilty that for William to be well again another child will have died. I know this sounds so harsh but that child would have died anyway and has been said it can be a comfort to parents to know they have saved another family so much pain. So don't beat yourself up about this, you didn't choose for it to be this way.
Post a Comment