Sunday, April 29, 2007

A big week ahead

The excitement of the London Marathon has not yet died down on this house hold. I have it on DVD and am still working my way through, remembering how fantastic a day it was. It feels a bit like a dream now and I have to look at my medal to remind myself I really did it! I was rubbish at sport at school and have grown up with very severe asthma so running really wasn't for me. I have now found that distance running seems to work very well for me. I still can't sprint and running for a bus makes me cough and wheeze. I think it is because asthma is caused by reactive airways and, once you have coped with the inial couple of miles, coughing and wheezing a bit, you settle into a rhythmn that is no longer something new for your lungs to react to. I just hope the summer and its heat and hayfever don't muck up this equilibrium because I have found now that I really need this way of burning up the stress and adrenaline associated with our journey with William. I need to keep this up so have entered another marathon, Loch Ness in October. I won't be able to raise anything like the amount I raised for CHASE at London but will try to raise a little bit more with a competition, together with a suitably Scottish prize, to guess my time at Loch Ness. More about that later in the year so watch this space.

I am really going to need my running this week as we have a huge one ahead of us. William is having his MRI scan of his brain on Thursday. This has been cancelled 3 times because he has been too poorly so we hope he keeps well over the next few days. This scan is to see if there are any obvious abnormalities in his brain to be causing his neurological problems. He is also having his veins scanned to see how many can still be used for future Hickman Lines. The surgeons are concerned because his chest veins are dilated and may not be suitable for further line access. Running out of places for his lines would be very serious indeed. As I have mentioned before, it is likely that William's only hope to lose his dependence on TPN is a small bowel transplant. We don't know if he is suitable for this and have been waiting to explore his suitability with the transplant team at Birmingham Children's Hospital. The idea of a transplant was first mentioned to us just before Christmas 2005. The team were made aware of him at that point. William has had a tough year this year and it was decided to formally refer him for transplant assessment in February, before going forward with the surgical intervention he needs to make him more comfortable. Wills has struggled with pain and discomfort and waiting for this opinion has seemed like an eternity. The news came last week that we are due to meet the team and discuss William on Friday this week - not much notice! The transplant team have had a meeting about him and this is the first stage of assessment. Paul and I will go alone this time and discuss William, meet the liason nurse and other members of the team and have a look round "ward 8" where the assessments and transplants take place. We don't know what they will say on Friday. To me, all this sounds a lot to just be told they can't do anything but it may just be a standard letter. Friday is the day we have been waiting for for so long and will be the beginning of the next phase in William's treatment, whatever that may be.


Katie H said...

I hope that the appointments are not too difficult this week and start to give you some more answers. You are all in my thoughts.

Becky said...

Hey hunny,

Just to let you know that I've been thinking of you all, and have had my fingers tightly crossed for your big discussions today.

Sending William lots of love and hugs!

Becky, Seren & Dylan xxx

Shadow said...

I hope the past week wasn't too stressful and everything went as well as it possibly could.

Thinking of you all.

Hugs xx