Friday, March 21, 2008

Where We Are Now and Thoughts for Good Friday

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I recently wrote a piece for our church magazine about Wills and his condition etc. It suddenly occured to me that people here know about Wills and support me so much. So, here is a looong blog entry explaining exactly what is going on with him. There is a religious bit at the end but it is relevant to today...William has a combination of health problems and physical disabilities that baffle every doctor (and there have been quite a few!) who has seen him. His problems affect his intestines, lungs, growth and his mobility and overall control of his body. He is totally unique and this makes things very difficult as the medical professionals have to treat him blind and no-one knows what we can or should expect in terms of prognosis. However, the combination of symptoms and the complications associated with the treatments that keep William alive lead most doctors to conclude that he is ‘life limited’ and unlikely to survive into adulthood.William’s main problem is that he has intestinal failure throughout his small bowel and colon. He is unable to absorb anything through the gut walls and his intestines lack the organised peristalsis that moves food and drink through the gut. This is due to a condition called ‘pseudo obstruction’. William is unable to eat or drink anything and all his nutrition comes from TPN, total parenteral nutrition, a feed that is given intravenously into a catheter, called a hickman line, in his chest. William has his TPN infusing for 20 hours a day so only has 4 hours a day to move around free of the line that attaches him to the feed and the pump that controls its delivery. Without peristalsis, William’s intestines resemble a garden hose with their contents swishing around and pooling in the loops of bowel. Gas also builds up in the gut which can be very painful. The fluid that collects in the bowel becomes a breeding ground for bacteria. As the bowel is designed to absorb its contents into the blood stream, these bugs can easily escape into the blood stream. When this happens, they reach the hickman line and breed there causing line infections. This is very dangerous and can result in septicaemia and the need to remove the line. This can happen at any moment of any day and William can become critically ill incredibly quickly when it does. William struggled with frequent line infections throughout 2007 and had to have several new lines. By the end of the Summer he had infections more often that not and was on intravenous antibiotics most of the time. At the beginning of November, he became very unwell with another infection. His gastroenterology team at Chelsea and Westminster Hospital decided to bring him in for another new line but this became infected within a week. William remained in hospital on a cocktail of strong intravenous antibiotics to keep the infections under control while his team held lengthy discussions as to what to do next. X-rays showed that his pseudo obstruction was worsening and this was causing him a lot of pain due to large areas of distention in his bowel.In January, William had an illeostomy. This is an operation where a section of small bowel is brought through the skin. William has a ‘magic bag’ over his ‘magic holes’ that collects all the contents that drain out. This was done to make the journey through his intestines much shorter in the hope that it would decompress his gut and reduce the distention and resulting pain he was experiencing. The hope was that he would have less pooling in the gut and, therefore, less infection. So far, it seems that the operation has been successful in preventing infection. However, doctors have been shocked to see how much fluid William looses through his gut. He has become clear that he has a ‘leaky gut’ where fluid that should be maintained within cells leaks and pours out through his gut as secretary diarrhoea. Due to William’s pseudo obstruction, this fluid is not reabsorbed so pours out. We were in hospital for longer than expected after the operation as it took time to balance his electrolytes and the amount of fluid he needs in his TPN to prevent dehydration. This time was very difficult for us all, especially Hope and Ellie who were separated from their Mum and Brother. We are now home but William has a demanding programme of medical care and physiotherapy for the spasticity he has in his legs and to clear the mucus that collects in his lungs. This take several hours a day with things that have to be done at set times. Our lives have to be dominated by this and it is often difficult to have a normal family life around it. However, we make the best we can and are prepared to flush the hickman line, deliver medications and empty stoma bags in all sorts of places to ensure Hope, Ellie and William enjoy as full a family life as possible.William’s future is very uncertain. We will try one more time to see if he is able to tolerate anything going through his gut. With the amount of fluid he is losing through his stoma, this is very unlikely but we need to try. At the moment, William is doing OK on TPN. However, TPN is not a long term solution. When a line is removed due to infection it leaves scar tissue behind and that potential line site is damaged. There are a limited set of sites that can be used. William has already had a lot of lines and this is a big concern. TPN puts a lot of pressure on the liver. At the moment, William’s liver is enlarged but functions well. In time, it is likely that it will begin to fail. The only cure for William’s condition is a small bowel and maybe a liver transplant. We are now exploring William’s suitability for this in the future. Transplant’s don’t last forever and survival rates following small bowel transplants in children are not encouraging. At the moment they are only carried out as a last resort in the UK and offered when the child’s underlying condition can be viewed as the end stage of critical illness. However, it is reassuring to know that there is that option. On top of this, William has progressive physical disability (perhaps a form of cerebral palsey) that makes it hard for him to get around and control his body. He has just passed his test for and electric wheelchair that will give him so much more freedom and independence, especially as he can attach his TPN bag to the chair.William’s condition can be heartbreaking and puts a lot of strain on the family. However, it is also a gift from God. Through all this, we are all put into situations where we would not have been otherwise, and where Christians need to be. Sadly, I know many parents of very sick children and several who have already been through the agony of losing a chid. There are others who minister to such families but it is all too easy to brush off their words when there is no way someone talking to you about their faith can have a clue as to how it feels to going through what you are going through. Hope, Ellie and I have all been in situations where we have been able to break down these kinds of barriers because we do know. We are fellow travellers along the same rocky pathway and we understand how painful and difficult a road it is. I have been asked why my God could not save me from the grief we experience. To reach people, Christians have to live their lives. Jesus did not live a life of luxury, parallel to those he reached out to. No, he joined them and lived among them. When we are living in a hospital for several months, we are doing just that. Life can be very difficult and there are times when I wonder how I will cope. I always find guidance in the Bible. I don’t always find solutions that I am looking for. Sometimes, Jesus shares with me that He knows the agony I am experiencing and, although he can’t take that away, He understands because He has been there too. The hardest thing for me is the isolation parenting William brings about. Paul works many evenings and can be on tour for several weeks. William can not be left with anyone other than Paul and I or a nurse trained in his care. There can be times when I am unable to go out and be with people. Worse still are times when I am stuck in the hospital away from Hope and Ellie. I may be being used there but will often question why. When I feel that way, I am drawn to Jesus in Gethsemene. He was left alone at His most difficult hour. Jesus puts us in difficult situations so we can empathise with others and enable them to accept our testimony to Him. When this gets hard to bare we need look no further than to He who has put us there for guidance. He put Himself there first so He knows how it is for us. The most important thing is that God wants to use us where He has us. I am looking for opportunities


Anonymous said...

Lovely pics sarah. I know alot of people will be pleased to see Wills looking so well. Well done for keeping on going with your busy life and still staying so positive.
Love to you all. Love you lots.
Mum xxxxx

Rebecca said...

A very thought-provoking entry Sarah. For a few years now I have been struggling on and off with the 'why' of it all, for the kids, and for other family members who have been through so much, and various answers have been suggested, but none have ever explained things to me as well as you just did.

Thank you. I hope that your choosing to share your thoughts, feelings and story with us will help other people as well. I'm going to read it to my Mum, as I think it will help her too.

The new photos are fabulous, and William is as gorgeous as ever. He really is captivating.


Becky xxx

Tinypoppet said...

just stopping by to say hi and send hugs :) xxx