Friday, March 20, 2009

Moving up a couple more ladders

It has been a crazy couple of days. Yesterday, we headed up the M40 to Birmingham for our first clinic appointment since William's transplant, having missed the first one as we were back on the ward following his pneumonia. All is going very well. We are now able to stop a few of the fourteen medicines he has been on every day and reduce the doses of a couple more. We have stopped an antifungal drug, the drug he was on to thin his blood, allowing it to flow more easily through his new blood vessels, and the drug he has been on for the last few years to protect his liver from the impact of TPN. We did stop this one immediately post transplant but his liver got a bit cross about it. For the first time in a year, his liver function tests are not normal so we can stop it. We have reduced the codeine that works with another drug to slow his intestines so they can absorb effectively and have reduced his dreaded 'nystatin', an antifungal he has to take, kicking and screaming, in his mouth.

As well as the meds, we have also reduced his feed as, after four years of struggling to get weight on him, he is now being over fed by his gastrostomy and putting it on too fast. He is down from 3 to 2 bolus feeds a day so I am hoping he will begin to develop some hunger and be tempted to try something to eat.

The only thing we have needed to increase is his insulin as his blood sugars are still a little too high. He now has to have two injections a day, rather than one, and may need to start another insulin with his feeds. His reaction to that was 'That is not a good change!" My feelings are that is is a very small price to pay for a transplant that has moved him along from lookingand feeling like this:

to this:

So pink and full of life. I still get excited about it every day. Everyone is so pleased with him that we don't have to go to Birmingham until his next admission for scopes and biopsies in April/May and only have to go to Chelsea once a month now. He will continue to have weekly blood tests and be weighed at home. He does still have to stay in isolation until the end of May but time is passing and we will soon be out and about again, not that I want to wish away a single moment of our lives together.

In my last entry, I shared that I was going to take the plunge and put some prints into the competition at the camera club I have just joined. Well, I did and managed to get the maximum marks of 12 for one of William running along the corridoor after a blood and only 1/2 mark short for a portrait of him, entitled 'waiting'. I got merit certificates to stick on the back of the mounts. I was really surprised and very happy. The judge spoke to me afterwards and told me I had an empathy with people when taking pictures and capturing them well and that I should keep going taking pictures of my children and other projects involving people. I am really interested in street photography and 'urban portraits' and hope to concentrate on these areas in my photography course. I also want to develop the work I have done in capturing our transplant journey and have an idea. All will be revealed soon in my 'arty farty blog' so watch this space. In the meantime, here are the two images I entered. I have posted them here before but, for anyone interested, is saves you scrolling through all my ramblings to find them. I love the portrait the more I look at it. A picture does say 1000 words. That was what it was like for William to be waiting. The high resolution version shows the sore lips and the tracks of dried tears. I have taken a lot of pictures of him post transplant but haven't quite captured what life is like for him now in that one single image that says it all. I hope I can soon as the comparison will be a powerful thing.

1 comment:

Molly said...

I'm glad that all went well at the clinic.

It must be nice to see Wills' many medications reducing already, I love it when I'm told at a clinic that I can stop or reduce one :) I was originally told that I'd be on around 7 different medications for the rest of my life, but I'm currently taking just 6, and 2 of them might not be forever.

The weight gain is fantastic! Is Wills on overnight feeding too, or just the boluses? And it's great that you don't have to return to BCH for another month. Well done Wills for making such brilliant progress :D

I'm sorry to hear that the insulin has had to be increased, poor Wills. But as you say that's only a little thing within the bigger picture.

The photos are lovely and congratulations for the marks you received. I'm looking forward to seeing some more of your photography once Wills' isolation period is over and you can get out and about a bit more.

Moll x x