Sorry it has been such a long time with no catch up on here! If you have been following my Gifts of Life blog here you will know that I have been very busy with that. With catching up at work now things are more stable at home, the Gifts of Life project, getting going with my writing and making plans for the future...I have been very busy in the evening when the children have gone to bed. No excuse not to keep things updated here though and I will try harder.
William went into Birmingham Children's Hospital last week for his 6 month review endoscopes and biopsies. I was relieved to be going in as we had been having some strange, sudden high stoma gushes after feeds and we were worried he may have some problems or a bit of rejection. He was fine in himself though so we were all a bit confused. Everything looks good inside, we are still waiting for his biopsy results. His prolapsed stoma does need re-doing and it will be another fairly major operation. William was very, very traumatised by the 'special sleep' needed for his scopes so we are not rushing into this surgery. There is no need as it is all working fine. It just can't stay that way for life and he does have some nasty sores on it from where it receives trauma as he plays. We have been asked to arrange some psychological and play specialist help for William to over come his terror of surgeons and anaesthetics first. The good news for him is that, because of the trauma that everyone witnessed and because things are looking so good, we are missing the scopes and biopsies that he should have in three months time and going straight to his annual review ones in November. Hopefully, he will stay well with no major complications over the next 6 months and we will stay home. We have been home now for over 3 months - a huge record in recent years!! He really is doing better than we could have dreamed. This is one of the main reasons why I am so committed to the Gifts of Life project and raising the awareness or organ donation. I want to see more outcomes like ours.
The girls are loving the stability of us all being at home together, although they are away on holiday in Wales at the moment. William's hospital admission clashed with Mum and Dad's holiday and, with no other childcare options for the girls, they just had to go along - I'm sure you can imagine how gutted they were...not!! William should be re-starting school next week and so the children will be enjoying the end of term and we are all looking forward to an action packed summer holiday to make up for lost time.
2 comments:
Glad to hear that all is going well for you and your family. That's great news that Wills' scopes seemed clear, you must be relieved! I hope the biopsy results come back fine. I hope all goes well for Wills going back to school next week, that's brilliant he's well enough to go back already. I didn't return to school til 10 months post transplant.
That's fantastic that you've all been at home together for 3 months now, I hope it continues :D
Looking forward to seeing you at the weekend and meeting Wills :)
Hugs,
Moll x x
Glad to hear everything's going well, and I hope William enjoys being back at school!
Becky xxx
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