Monday, June 29, 2009

Closing doors and looking for open windows

Wow, I hadn't realised how long it has been since I last blogged here. Is anyone still there? I really am going to get back to blogging here more regularly.
We have gone through a strange stage in our adaptation to life after William's transplant recently. For the last few weeks, we have been approaching something that resembles a 'normal family' routine. William is back at school and, at the moment at least, is really very, very well. At the beginning of June, we went to Birmingham for his scopes and biopsies due at 6 months post transplant. All seems to be going well. His stoma is a bit of a mess as it is prolapsed and coverd in sores where it takes a bashing as he runs around enjoying his new found energy. It does need to be 're-fashioned' but it is not urgent and Wills was in such a state over his 'special sleep' for the scopes that the team want him to work with a psychologist to get a bit of control over his phobia before hand. This will be a fairly major op and will necessitate a few weeks in hospital and some more painful and unpleasant experiences for him. There is also no guarentee it won't prolapse again. As William's colon was removed at transplant, his stoma is for life so this is just something we will have to learn to live with if that is the case.
The girls, William and I are really enjoying getting out and about and enjoying the summer. This is the first time we have been home for any decent time in the summer and so we have never seen Croydon in the hot sun or had the chance to enjoy trips to London and further afield. We are certainly making up for lost time. We also have plans for a trip to Mum and Dad's - the first time William has been able to stay there so that will be really special, the British Transplant Games and some 'mini breaks' to combine Gifts of Life photo shoots and seeing a bit more of the country.
Most of all this adapting to life free from the constant threat of a lengthy time living in hospital is very exciting. There are some aspects that have been hard though. The children and I have spent so long out of our social circles that, in some cases, it sometimes feels very difficult to see where we fit back in. William and I returned to our church for the first time in nearly a year yesterday and everything has moved on so far without us, and so much has happened to us and within me that I hardly felt like anyone really knew me anymore. It will take time to see where the 'new me' that has been changed so much through this journey can slot back in. On the flip side, I have so many wonderful new friends who I have met along the way who are just terrific and I love them very much. There is the journey itself too. Now we are eight months after transplant, I am now able to look back on it all and using it as inspiration for new projects. So, there are some great things and some more tricky things that we are dealing with at this phase in the journey. I guess we have reached that stage of reflection where we are processing it all and how it has changed us, mostly for the better and I certainly have that feeling that I have so much to share and to give to others as a result that it is a real need to find how I can go about doing so. A transplant in the family is a real life changing event but it isn't just the transplant itself, it is the three years previously where we spent 80% of the time in hospital. This has had a huge impact and I can't just go back to where I was before, in some cases it is impossible to, even where I would want to.
Very sadly, the main casualty of the life we have led over the last few years is my relationship with Paul. I am not going to blog about the details but for a variety of reasons, Paul has found it very difficult to fit into the family. There are, of course, other things that have happened to our relationship during these last very stressful years. This kind of journey either makes you or breaks you and, unfortunately, it broke us. It is sad as we did have something really special once upon a time in a world before our vocabulary was dominated by medical terminology and the expressions we shared became limited to anguish and stress. This next chapter of my journey with Willam, Hope and Ellie really started a long time ago . It does, inevitably, bring about some tough times but I know I can turn to friends and my wonderful parents for support. I have three wonderful children and we have lots of fun things planned for the summer. On the whole, life is very good.

Tuesday, June 09, 2009

Long overdue catchup!!

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.