Wednesday, November 26, 2008

A Bit of a Bad Day

This is going to be another quick blog. Partly because I am exhausted and partly because I want some time to reflect on the week that has just passed before I fall asleep - reflections which will take me nicely to the point at which I left our transplant story, some of which I am sure will make it onto this blog tommorrow. I also have a piece of commissioned writing to get done by Friday.

So, a brief update. Wills has had a bit of a bad day today. All is OK but he has been in a lot of pain and distress. He was blown up like a football all day and had a lot of air in his tummy. He was in so much pain we had to make sure all the air was in his bowel and not around it - i.e. to rule out a perferated bowel. This created some worrying moments of deja vu as we were in x-ray at about the same hour as we were exactly a week ago for the same reason. I couldn't believe for a second that we could be in the same position a week apart, the same that is except with a different bowel. Thankfully, this time there was no perforation, just gas and distention throughout his gut. We were planning to up his feed by 5 mls a day but we have stayed at 10 mls for the third day in a row. He is doing OK but his gut just needs a little more time to really get going. His stoma losses are a bit irratic and rather green and watery. His bowel is already performing heaps better than his old one ever did and will carry on improving.

When the blood test results came back this afternoon, it became clear partly why William has been feeling so rough today. His tacrilimus level was far too high which would have made him feel very unwell. His IV has been stopped overnight and he will have half the dose tomorrow. It is going to take a little time to get his levels stabilised and a regime worked out for him.

The other thing we were warned about today is rejection. William has no signs of rejection yet but it is early days. The peak time for initial, early acute rejection is 10-14 days. We are on day 6 so next week will be crunch time for that. There is no reason why William should get any rejection but it is very common in small bowel transplants, happening in about 80% of children transplanted and it is treatable.

As I write, William is much calmer but stil fitful in his sleep and waking frequently. His sleep patterns are very disturbed at the moment. I am hoping he settles and sleeps well tonight and wakes up more comfortable and feeling more like himself tomorrow.

I haven't mentioned our donor for a while. I now know a little about the donor and family. Of course, this is not the topic for the blog. The transplant co-ordinator explained the process for writing our thanks and advised that we leave it a month or so to enable the family to grieve, for us to come to terms with William's transplant and for Wills to get better so we have more to thank them for. I do feel bad that we have this tremendous gift and I haven't said thank-you but I trust their experience. I have chosen a card and have it ready in my journal, together with the piece of paper I was given containing the details of our donor. The family are in my thoughts and prayers tonight.


Katie H said...

I do hope that Wills has a peaceful night and tomorrow is less painful for him. You all remain in my thoughts
(as well as the donor's family). Take care.

Rebecca said...

Hi hun,

Glad to hear that all is well, but I really hope that William will feel much more comfortable tomorrow, especially if the Tac levels get sorted.

Both you and William, and the donor family are in my prayers.


Becky xxxx

Aunty P said...

Sarah If you would like to write something to go on our website we have an 'open letters' section where recipients can write to all donor families. You might like to write something for there until you can write directly to your own donor.
love and hugs

Jac said...

Don't be too hasty about writing to your need time, and they need time. I actually waited several months (if not longer) - mainly so I was ready to write what I needed to but also so I could tell them more about my progress and how far I had come post transplant. it is totally personal though and you will just know when the time is right.
Hoping William has an easier day today..
Jac xx

Anonymous said...

Poor William, I hope he feels better today. I sent him a Thomas light to entertain him if he felt bored in the hospital. I also sent Hope and Ellie knitting vouchers via email on Postpal, I hope it can lift their spirits what with all that is going on. My prayers go out to your whole family, stay strong. We're all with you.

suzie said...

Hi Sarah,

I hope William has had a better day today and you managed to get some much needed rest. As the last poster said 'we're all with you' and sending our love and prayers daily.