Saturday, December 20, 2008

The Psychological Side to Transplant Recovery

Yesterday's blog centred on some of the technical aspects of transplantation. Jac, I'm sure you 'learned' stuff because I got some of it wrong but it is my understanding of some of the issues we have faced, rather than medical fact that you will find on here at the moment. I think I may well research some of this in more detail though as it is so fascinating. The only technical thing to report today is that William's liver enzymes are steadily coming down. This is a huge relief and, if the trend continues, he will not need a biopsy next week. This would be fantastic, given the trauma that any hint of an idea he gets that a 'special sleep' may be on the cards creates.

It is the psychological issues of transplant recovery that I have been thinking of a lot today. Wills has been through an enormous ordeal. We adults understand that this transplant was carried out because William needed it to remain alive. William has a mixed understanding. Linguistically, he is way beyond his years and quietly takes in a lot of what adults say around him. However, conceptual understanding is a whole other thing, meaning that he knows things but doesn't understand them. This is a pretty scary half way house to be in. He is constantly looking for reassurance as to what aspects of his current symptoms and treatment will be 'forever' and what is temporary. It is very hard for him to understand that the pain and discomfort he often feels is due to his digestive system getting used to feed and is actually a huge improvement on the flat and inactive gut he had before hand.

One of the intersesting signs that his new gut is functioning well is that he is salivating for England. I am seriously considering a trip to Mothercare for some of those muslin clothes that you never venture anywhere when you have a baby. The consultant on this week shared that he was told in medical school that the best way to judge when a baby is ready to be weaned is when they start to salivate as this is caused by the gut sending messages to the mouth to get ready for food. William used to salivate as a baby and always had trouble swallowing and spitting it. We used to use suction to clear it. As his old bowel became more and more dysfunctional he must have stopped producing as much. Over the last few days, his new bowel has begun to send these messages, indicating it is ready for food. This is a fantastic sign as to the health and function of the bowel but poor Wills has no idea what to do with all this extra fluid in his mouth. He has forgotton how to spit and swallow so just holds it in his mouth. He is confused and frightened by it and finds it difficult to speak. At times, he is becoming somewhat withdrawn as a result. We did briefly try a patch behind his ear to dry up the secretions a bit but we peeled it off sharpish as the consultant with overall responsibility for the small bowel transplant program explained that they haven't been passed as safe for use post transplant. We have to try and stimulate his swallow by touching round his mouth and stroking his throat.

His trauma is not helped by the fact he refuses point blank to open his mouth for nystatin or the gel we are now using in its place. This results in a battle and force from my side every time it is required. It is awful and makes me close to tears as I know that it is putting him off trying anything in his mouth. He was keen to try food but is now more aversive to it than ever before. He will get there but it is going to take a lot of work from the speech and language therapists, psychologists and ourselves. I think the main thing is to normalise food and tasting, make it fun and not make a thing of it. We have been playing with food and painting and sticking with it and playing funny face games. Wills is unable to move his tongue in all the positions needed to eat. There are no more pictures of this because we need to be natural, not pointing a camera in his face when he is engaging with food in any way. We have to encourage licking and dipping - what an excuse for some yummy chocolate foundue's when we get home! I think the important thing will be to sit down as a family and eat and include William at the table. We will actually have the time to do this now I won't be doing TPN every evening.

It is hard and worrying to see Wills so shy, withdrawn and, at times, traumatised but he was similar after his illeostomy this time last year and I know he will get his confidence back in time. He has been through a huge amount, not just with the transplant, but will all the infections and line changes and virtually living in hospital for the last 12 months. Right now he needs lots of love, encouragement, security, praise and, above all, time to process and come to terms with it all in his own way. It is pretty full time and tiring to provide all this for him. I am off for the day tomorrow for a lunch to mark Mum and Dad's Ruby Wedding. It will be lovely to see them and Hope and Ellie and to relax and have a lovely meal - my Christmas dinner as well! I think it will be a break I really need to re-charge my batteries.


Le Greg said...

Have a great evening out, you deserve it!

Rebecca said...

Sending you lots of hugs and love hunny.

I know it's not the same, but Seren has been having some CF-related confidence issues lately, and I find it's so much easier to do the medical 'physical' sort of stuff than to try and help her 'mentally'. It's hard to know what's the right thing to say to a six year old who has always, like William, understood more than usual and been more curious than is age-appropriate, but only has a six year old's emotional capability.

Dylan is 4 yrs 3 months, and still hasn't learned the words CF or cystic fibrosis, or asthma or autism, and has no ideas of such concepts, but Seren was asking complicated CF-related questions at 2 years old. In some ways, it's easier not to have to explain it all to Dylan, or to have to deal with the psychological side of it all.

I haven't really got any similar experiences in my own childhood to draw on for inspiration or understanding, so it's a tough part of parenting, to try and imagine how hard it is to be a child and to be coping with such adult concepts that even adults find hard to come to terms with.

Anyway, I am sending Wills lots of encouraging hugs, and I hope that food will soon be far less scary for him, and that you find more ways of helping him to relax around it.

And I hope you've been having a fabulous night out and really enjoyed yourself.


Becky, Seren & Dylan xxx

Anonymous said...

This brought tears to my eye's Sarah. I wish you and all your family all the love and strength in the world.
As a mum and grandma I can't begin to know how hard this is for you.
Enjoy your lunch with the rest of your family.

Cat said...

Hey hun..not been in checking up on you for a couple o' days..interesting reading your latest blog as it brings the memories flooding back,I have to say the psychological effect doesn't ever slip away quietly either Aaron still sees a lovely psych therapist 1 to 1 even coming up to 9 yrs post tx,kids are all different and some accept it easier than others I think the age our boys were at at time of tx when they have already been through so much and at such a crucial early developmental stage does profoundly effect them,it took me a little while to realise my son needed the holistic approach healthy mind as well as body,I was very pleased when BCH liver unit got a psych. :0)))
Food is a tough one esp when we want to put nasty tasting stuff like Nystatin in their mouths..his mouth will be VERY sensitive too,Aaron used to wretch & gag alot which put him off as well us adults around him desperately wanting him to eat,it puts the pressure on will come naturally in time...we felt the Pred gave Aaron the munchies he eventually wanted to eat with his new functioning tummy...playing,dipping as you say hot,cold rough, smooth different colours are all great and if he tastes something he likes...woohoo he may taste some more!
Hope you had a wonderful night out...
huge big hugs
Cat x

Anonymous said...

I can understand the psychological side of having a transplant and realy early on post tx my parents did say i was pretty quiet and not like me. And we all get time's when we do think about it all the time. My mum did suggest that could a play specialist on will's ward help him "play" it through. Which helped me lots when understanding the fact i needed a transplant when i was 5 (althrough in the end it never happend). And we played all sorts of things; like what i'd see; then playing with dolls and doing all the thing's id be able to do after my new heart. And it did really help me. Showing there is a great side to transplant once you get through the rough side.

No advice with the eating part; as i didnt have any problems there.

But do remember; once youre through this; there is so much fun and happy times after transplant and you will see the great benifits transplant can truly bring.

Enjoy your evening; you deserve it!

Emma xxx

Janet H said...

Hope you enjoyed your lunch with the rest of your family sarah. Sending you and your family lots of good wishes

Janet H x

Jac said...

I must say that even as an adult the psychological side can be harder than the physical side. I was pretty anxious post transplant and I did fully understand what was happening - but everything was so different and my poor wee brain found it hard to compute these changes. Suddenly I didn't know my own body! But like the physical healing, it just gradually improved and suddenly it was like this was the way I had always been. It's just time, as you already know.

jac x

p.s I think you have a great grasp of the medical stuff! Although I do psychiatry so wouldn't really know any different ;-)

Becky said...

I just wanted to ask you to thank William from me for the lovely Xmas decoration and card - I sent a card to him this morning, and recieved his not that long ago (our post is a little late!) so couldn't thank him for it in my card. I'll put a photo of it hanging up on my blog soon, but I just wanted to say thanks!

Lots of love, Becky xx

Anonymous said...

Lots of love to you and Wills - and I hope you have fun with the rest of your family too. Yaz xxx

Jessica said...

Wishing you and William a very happy Christmas.

meme said...

Hi Sarah,
Hope that you had a great time with the family.Wishing you all good health and happiness at this special time.We loved the card and decoration it has pride of place on the tree.
Love Maria and Michaelxx