Wednesday, March 28, 2007

Back to the hospital again

This is another of those quick posts to let you all know that we are, once again, on our way back to the hospital. Not such a dramatic emergency this time, thankfully. William has had a high temperature all day but has not seemed to poorly in himself. However, I asked for some blood tests to be done to make sure nothing is brewing and, unfortunately, his white cell counts and platelet counts show that his body is struggling with another infection. His inflammation markers are also up and his red count down. We hope this will just be a quick stay and we will soon be home again to enjoy the Easter holidays, even if that does mean home on IV antibiotics. It seems we can never relax with everything stable for too long these days!

Sunday, March 18, 2007

Emotional times

We are all settling back down to normality. Not without a few inevitable hick-ups though. Hope is now too old and wise not to know that there are some concerns at the moment and she can't get the image of William lying on the floor so ill out of her mind. It is so difficult because you want to protect the siblings from things that children so young should not have to concern themselves with. That works for Ellie but not for Hope. In some ways, all of this has made he grow up too quickly but, of course, she is a 10 year old child with a 10 year old child's emotional maturity. This results in a great deal of emotional turmoil between things she understands too much about with those she understands so little of. This, with all the things every 10 year old has to worry about, such as going up to secondary school, a growing interest in her self-image, boys and the latest fashion is all a bit too much for Hope at the moment. There have been a few blow ups while we learn how best to move forward and support each other. One of the week's lessons has been that Hope wants to share in all we are feeling about William. I have been accused of not caring enough because I never cry, words said as poor Hope sobbed her heart out because "they want to make another hole in him (the illeostomy) and he is only 2 and a half". I explained to her that, oh yes I do cry - in bed, in the bath, when I am out running. We have made a pact to let each other know how we are feeling and not to hide emotions away anymore so we can support each other.

The girls made some lovely banners and posters for Mothering Sunday and did their very best to make it a special day. They did too, it was a lovely day. My thoughts are always with those Mum's I know who have lost their children. It can be a bitter sweet day, even if you have other children and heart breaking for those who have lost their only child. It is often said that we borrow our children while they are with us, only to let go as they grow in independence. Some of us borrow our precious little ones for a shorter time. As this post no doubt demonstrates, I am still feeling emotional following the last few months, and probably will remain so until we go to Birmingham for our inital appointment towards William's transplant assessment. A good friend of mine has just had a baby and I got a cuddle this morning. She is gorgeous and perfect and, whiles ecstatically happy for them, I still feel a pang for William and the healthy baby he could have been. Not that I would change him though. He is amazing.

Emily ( came home today after her lung transplant. I am so happy for her. She deserves her second stab at life so so much. Right now, I hope that William is assessed as being suitable for transplant and he can have a chance to live a life away from drips and tubes. (even it he will always be a bit wobbly).

One practical plea - my mobile phone crashed and burned yesterday and, with it phone numbers of all my friends that I have made in the last 2 years or so. I am using an old phone but have no new numbers If you read this, could you please text me. I would have texted a few of you today to say I was thinking of you - you know who you are and know that you are always in my thoughts xxx

Tuesday, March 13, 2007

We're back!!!

Hi everyone! We are finally back from hospital and back online! It has been a hard couple of months. Once again, the girls have been away from home at Grandma and Grandads. It was great to have them back again on Friday. It has been a great stress on us all. Although we are home now, which is fantastic, we know that this year will bring further hospital stays. William's health has deteriorated over the winter. Of course, this may just be due a bad winter and he may bounce back. However, it has been decided that now is the time to start thinking about whether or not he may benefit from an intestinal transplant. He has now been referred to Birmingham Children's Hospital for assessment and for advice on the best surgical intervention, such as an illeostomy, to help make him more comfortable in the mean time. William is getting a lot of infections due to the stagment fluid that sits in his intestines. One such infection is pseudomonas aueriginosa, a nasty bug that used to colonise his lungs. Unfortunately, this bug has returned in his intestines, around his gastrostomy and, once again, in his lungs. He is on IV antibiotics at home at the moment and will start antibiotic (colomycin) nebulisers later in the week. We are also having to restart his chest physio. He is back on a lot of the treatment he used to have when his diagnosis was "probably cystic fibrosis" as well as the TPN and IV medications for his intestinal failure. We have calculated that all this will take about 3 hours a day.

With all the extra care, breaks like those we get at the hospice will be even more valued. We were there this weekend (where William enjoyed the swing). The main reason for our stay was to attend the reception for the marathon runners held at the nearby Losely House. It was a fantastic day. The girls had their face painted and enjoyed playing and painting with William. We had a fantastic three course meal and wine (Hope was most cross as she was given sausage, chips and beans with the other children) and many official photos were taken for local newspapers and for team shots etc. It was a really exciting day and the marathon seems so much more real now. I was relieved to share training stories with other first time runners and learn that I am ahead of most in my training mileage. I was asked to share a little about why I am running for CHASE with the other runners. With all that has been going on so far this year, I suddenly felt very emotional looking out to see all those people (54 runners plus familes and CHASE staff) and felt I was talking in a very squeaky voice with a huge lump in my throat. As many people know, I can talk and talk but wasn't able to say an awful lot. Still, one lady did tell me afterwards how moved she was and how she was going to work harder with her fundraising. All the runners will know why children are referred to CHASE and I think seeing William attached to his TPN in his chair during the morning and then running around in his unique wobbly way would have spoken much loader than any of the words I had to say. The CHASE marathon team has been going for 10 years now and are just £7000 away from having raised 1 million pounds. The 2007 team will reach that milestone which is absolutely amazing. I know many people who read this blog have already sponsored me - thank-you so much! If you haven't done so, please do help us reach the magic million pound mark by clicking on the link to the right of this page.

Thursday, March 01, 2007

Further delays...

Well, we should have been going home today but, unfortunately, William's new TPN prescription has posed problems in gaining stability in the bag. Each bag of TPN contains all the nutrition, vitamins, minerals and fluid the recipient needs in the day and is a unique presscription to the individual, based on blood test results. With such a complicated mix of chemicals, there can be problems in stability and each bag needs to be stable for 2 weeks to enable storage in the fridge. So, William remains on fluids alongside his TPN, although we are expecting the new prescription to arrive today. They then want to see if his electrolytes balance OK on the new stuff so it will be next week before we are home. We are due in overnight for an MRI scan and to train with new home TPN pumps on Thursday anyway so everyone has agreed it is silly to go home for a couple of days and come back. Another week in hospital with the girls away in Stoke is looming...