Anixety about Tylers Operation (long)

[shaza12345]

need some reasurance please start from the beginning my DS which is now seven months old was born with Aperts syndrome which is is a genetic defect and falls under the broad classification of craniofacial/limb anomalies.Apert syndrome is primarily characterized by specific malformations of the skull, midface, hands, and feet. The skull is prematurely fused and unable to grow normally.Apert syndrome is a result of genetic mutation. The change is in a gene on chromosome number 10 called 'Fibroblast Growth Factor Receptor 2' .This one tiny change in the FGFR2 gene results in the physical features of Apert syndrome." sorry thats the tecnical stuff to tylers condition in saying that tyler was blessed with only having a mild condition of Aperts syndrome resulting in have only two bones fused together and having small face features which people can hardly notice onless you tell them.. Any way he is having an operation this friday on his head to unfuse the bones for his brain to be able to grow. i am so scared and worried and anxious because i know he has to have the operation but im so scared of something going wrong and losing him. There are risks in this operation like many head operations and i know there only small risks and probably unlikly to happen and i know he has to have this operation we have no choice sorry but i just dont know how to handle my fear i have to be strong for him and the operation is so close to christmas i just want my baby boy to be home...
The poor little guy has been through so much already since he was born i just hope and pray for the best.. see his web page to see pictures....


Please if anyone has been through what i am about to experince i would love to hear your stories and maybe it might give me better strength and reasurance everything will be ok..

sorry its so long i just dont know who else to talk too...

[Jaycee]

Aww Sharon I am so sorry you and your beautiful boy have to go through this.
I don't have any experience of advice, I just wanted to say I'll be thinking of you and hope all goes well.
Please let us know how the op goes.
I'm sure you'll have in home and back in your arms in no time.
Big hugs to you.
xxx

[Hollybolly]

Sweetheart, I must have completely missed everything about this - I didn't even know about him having the condition or going into hospital

I am so sorry

I can't offer you any help or advice on the condition, but please know that I am here for you whenever you need me to be xxx

You have my number, and PLEASE call me anytime you need to talk - no matter what time.

I just know everything with his operation will be JUST PERFECT and will go exactly as it should - your little man will be home with you & Steven for Christmas.. and everything will work out to be a wonderful first Christmas as a family

Its so hard not to be anxious - of course you will be, you're his mummy... and as a mum all we want to do is make everything better & protect them - its horrible when situations like this one take it out of our control

Take comfort in the fact that the surgeons doing the operation are more than experienced in this specific field... and although there might not be anyone here on BB who have been through it - those surgeons have... and if they have confidence in themselves, then you have to trust THEIR confidence in them selves... and that gives you confidence in them

All of my thoughts are with all 3 of you.. and I just know everything will be fine

You know where I am if you need me xxxxxxxxxxxxxxxxxxxxx

[SJL]

Hi Sharon,
I dont have any experience with apert syndrome but I have had a little bit of experience with surgery so I hope my words are helpful.

Good luck for friday, I am sure Tyler will be fine. When my little girl had surgery I was so anxious I was pacing the halls from the minute I left her til the minute I was called to recovery. Only thing I can suggest is make sure you have someone with you to keep you occupied and dont wear a watch, the time goes much quicker when your not checking the time every 10 seconds.


Good luck

Sjl

[shaza12345]

thankyou for everyones kind words i have been a nervous reck i just want it over and done with thanks again and thanks holly you werent to know thanks for your support