Quite by accident, I missed a huge milestone moment last week. I sent Fran off to her cleft team review and when she came back, she was discharged from full team care! 15 and a half years of regular meetings with the same people came to an end and I wasn’t there to see it happen!
But to back track a wee bit.
You may remember that Fran had an operation in the summer that involved taking a piece of skin from the side of her mouth (the inside of her cheek) and lifting it up into the roof of her mouth. The skin graft stayed attached to the inside of her cheek, so that it wouldn’t die off and the intention was to lengthen her soft palate, which had never quite met the back of her mouth. This meant that her speech had never been as clear as anyone would like and she lived with a permanent slight nasal hiss to her voice. While everyone who got to know her understood just fine, it did get worse if she had a cold and wasn’t ideal for her long term.
It was a pretty big ask to have the operation; she knew it was going to be the most painful one she had had and for various reasons, she was having it later than most kids do, meaning the graft had to stretch around adult teeth. And it was quite a stretch, so she found that it really did hurt. It was a long operation and it took her a long time to come round properly. She was in lots of pain and didn’t eat well for a week or so. FOr the first time, though she has had one tough operation before, we saw her take a real psychological tumble afterwards. She was flattened and down and then various complications occurred. The graft partly failed and she had two a&e trips and for a while was struggling with a bit hole in the roof of her mouth, lots of oozing and pain bad enough to need prolonged codeine and amitrip. We’ve never needed to give her anything of the sort before.
Miraculously the next team visit saw the hole repairing itself and everyone was very pleased. Things looked a bit bumpy inside but the infection and sloughing had cleared and her speech was demonstrably improved. She was still pretty shaken by the ordeal but coming back to herself. However she was still struggling with deep cheek pain 2 months out from the op and couldn’t close her mouth (the graft was sitting between her back teeth) which meant that it was hard to control all sorts of things, not least saliva in her mouth. She wasn’t very happy. They decided on a wait and see approach but quite quickly that wasn’t good enough. Her surgeon decided to fit her in for a quick operation to release the root of the graft, which by now had its own blood supply established in the roof of her mouth. She only got a weeks notice and then we were off to hospital again – this time to a day ward.
Not only was she having more surgery but she wasn’t on her home from home, D2! Woe!
Thank goodness, this time it was all far easier. She was round very quickly, pain was minimal and after a couple of days of recuperation, she was back and raring to go again.
Yes, well she would have been if that weekend we hadn’t all come down with a horrendous stomach upset. Oh my word we were sick. Yuck.
And so. Follow up appointment last week and all of a sudden, the plastics side of the team has released her. Her beloved Mr Hall, who met her at 2 days old, will do no more than take a quiet interest in her until she is 18 now, when she will be able to decide if she wants him to do anything with to straighten up her nose. That’s it. Surgery is potentially over. All finished. All done. She’s now handed over to the orthodontics team who will finally start working on her teeth (which bother her far more than her nose). This has been very delayed as she still has baby molars but they’ve scheduled to start, no matter what, as soon as her GCSEs are over.
After 15 and a half years, we’ve reached the end of the major cleft palate work for Fran. Countless appointments, 9 operations, a team we’ve mostly known since she was tiny and who have watched her grow up, a man who has brought her from looking like this:-
It’s been rather an amazing journey. To go from the shock of “something wrong” at her birth to suddenly it all being as well managed as it ever can be and a beautiful girl with a speaking voice to be proud of and everything ahead of her is quite special. And we are done. Whatever else happens now, if she chooses more surgery, it will be something she does as an adult, with a team who she already manages her own care with, where parents aren’t part of the equation and who don’t stay over on the ward afterwards. I daresay the braces journey will still feel quite big at times but I hope *crosses everything* that Fran has got past the biggest hurdles of her health care. 9 operations. All done.