Christopher's Hospice

We went to visit Christopher's Hospice today. We spent a lovely evening there, looking around, having tea and playing in the garden and soft play. I could really feel my body relax there. The girls were running around having loads of fun and we all felt like this was a lovely place to come and unwind. We are going to stay there for a couple of days next week for a very well needed break. The girls' school is closed for polling and and inset day and it just happens there is a space - perfect! The children sleep downstairs and have one to one care while the rest of the family sleep in a family flat - thus enabling loads of time for the siblings. Meals are provided and there is music, multisensory room, softplay, art and craft, hydrotherapy...and a lovely garden where all 3 children have already had heaps of fun. I can't wait to go back next week - it will be a mini holiday and we can all relax and have a lot of fun together.

Of course, there is a chance that, one day, we could be facing a very different stay here as terminal care is also offered. That is the hard bit. Children referred to CHASE are not expected to live beyond the age of 19. At the moment, I couldn't imagine my little boy that old anyway. I tend not to think of him at different ages and just enjoy the day we have today with the hope that there will be many many more.


The Hospice is funded by a charity called CHASE Hospice for Children. Spurred on by the wonderful Angel, a young girl with cystic fibrosis waiting for a heart and lung transplant. Her blog is at www.pinkandsmiley.blogspot.com and is well worth a read - she is an absolute inspiration! I have decided to join the Hydro-Active Challenge to help Angel raise transplant awareness and money for the Cystic Fibrosis Trust and to raise money for CHASE. It costs nearly 4 million pounds to run the hospice and they just broke even last year. if you are reading this and would like to help, please sponsor me at www.justgiving.com/williammilne.

Another lovely day

This photo was on our old blog on the previous site so I am posting it again as it is such a lovely one of the 3 children together.

We had another lovely afternoon out today. We went to a museum and lovely gardens and saw some more animals (both in the museum and garden). William enjoyed going round saying "bye bye" to everything in the natural history part of the museum. The girls and I did an interactive session looking at some of the museum's musical instruments while William and Paul played outside. Ellie got the chance to show off some of what she had learned at an African drumming club she took part in at school last term. I actually had a splitting headache all day but the sun was shining, it was the last Saturday before Paul starts work at the Glyndeborne Opera Festival, and I am so determined to make the most of every day we are all together. I was right too because we all had a lovely time and the girls can't wait to go back there again. Tomorrow will be a home day though.

I finally got around to posting on the companion blog this evening. You always seem to get into these things when you have planned an early night!

Clinic

We went to clinic today and William's consultant is pleased that he is stable and his liver is still coping well with the TPN. His weight gain was really good again, but not too good this time so his TPN "recipie" is fine for now. We discussed the idea of an ileostomy some more today as it seems that is the way William is going. This would control his liquid stool output and stop it all building up and causing him discomfort, especially in the early morning. It would also help the build up of yukky liquid in the intestines that seeps and backtracks back into his stomach. This can hurt and make William wretch and feel sick. It seems an illeostomy is highly likely to happen, it is all a question of timing. Big ops like ileostomies can adversely affect bowel transplant outcomes so we really need to wait until his tests at Great Ormond Street and transplant assessment. If the assessment decision is to put him straight onto an active list he can live with a bit of pain and discomfort while waiting. If they decide to wait until his liver is more seriously damaged he will need the illeostomy to help alleviate symptoms in the meantime. It is all such a careful judgement of cost and benefit, timing and risk management. We are getting more used to it all though and life with TPN does not seem such a scary strange thing. We haven't had any line infection scares for 3 weeks and it has been so nice to be at home. We do need to chase Great Ormond Street though because, while it is nice to be stable for a while, these decisions and plans for the next phase of treatment etc do need to be made and are being held up. I will have to call them Monday.

Hospice

We met with our nurse from the hospice today. It was a good meeting and they are offering us some excellent opportunities for respite and to get involved with sibling groups and toddler groups and other things where we will meet others in the similar situations. They even have other families with similar complicated bowel and intestinal conditions with no clear diagnosis on TPN and waiting from bowel transplants - just like William. That was really good to hear as I don't feel so much like we are the only ones with no clear answers any more. The intestines and bowel are so big that there it is like finding a needle in a haystack sometime as the problem could be anywhere along several feet of muscle and nerves. They have characterised William as having a life threatening condition due to the nature of his treatment. This was a bit of a shock to here as we were thinking he fitted the life limiting description. That is all it is though, just a description. They are right though - his life is constantly under threat from infections and other complications of his treatment. His life is limited by long term effects of TPN and possible post transplant prognosis but is also under immediate threat. We had to discuss our resucitation plans which was a bit upsetting but, of course, at the moment we want active resucitation pulling out all the stops. He has already had to be resucitated with sudden septic shock with a line infections and was fine the next day so his immediate problems can be sudden and need a lot of intervention but he picks up. We will be reviewing this as his situation changes. We are all going to look around next week and have tea. All the families, children and staff eat together there which sounds lovely.

We have clinic tomorrow so we'll see how things are. He has had a stormer of a day as far as really horrible sludgy gastric aspirate and loads of similar stuff in the nappy goes with 3 changes of clothes before he even made it out od the cot this morning! He amused us by calling "Daddy" louder and louder before exclaiming "yuk!" as Paul went in to find his second pair of jeans covered! One situation I am more than happy for him to keep calling for Daddy in!!!

We're on a roll...!!!

We're currently on a most excellent roll of relatively good health and getting out there and enjoying family life. After Easter Sunday's TV excitment we woke up Monday to our usual routine of blood tests and dressing change with our fantastic community team. After that, we all got into the car and drove to Paul's brother on the coast for a family Easter. William had a bucket and spade in place of a chocolate egg and we took him down to beach to christen it. He didn't know what to make of it all at first as it was very windy and not too secure under his newly toddling feet. He loved playing in the sand though, so much that we will be off to get a little sand pit for the garden in the next few days. We took all the IV drugs and TPN and put it all up away from home for the first time - a big milestone towards normality and freedom!

Tuesday was the last day of the school hols so we decided to take another trip out. We went to Greenwich and enjoyed the museums and the park. Hope and Ellie were impressed with the big telescope. Today William had a lovely time playing and painting with the family support nursery nurse. They are so good and have helped us so much with William's development.William has been home 3 weeks tomorrow - the longest for nearly a year! It is great spending so much time together as a family but every day we wait for the letter signalling the next set of inpatient tests and operations that will take us ever closer to the potential transplant assessment. Still, we make the best of every minute we are all home together. However, I have just taken 50 mls of dark green bile from his gastrostomy. This is quite often a sign he is getting poorly so I am hoping he will wake up tomorrow just as well as he has been lately.

Tomorrow is a big day as we are meeting our hospice nurse. We have been accepted at a local hospice, for respite initially. This will be a place we can get away together for a break and relax with the support of nurses but can also leave William if we want to do something with the girls that Wills could not do because of his care. I am looking forward to going all together with the whole family for a break.

A Tip Top Day!!!

Wow, what an excellent day! For once, this was a special day for one of the girls and William stayed well all day enabling it to happen without stealing Mummy away. Hope was on the TV show "Smile" this morning. She was selected through school to be one of the first children in the studio for the first series. We rehearsed on Friday and were up bright and early...at 5.30... to go into the studios to take part in the live show this morning. The children took part in various funny and messy games and sketches throughout the morning and then in a girls v boys head to head computer game challenge. They had to shout out instructions rather than take the controls themselves which proved really tricky. Hope was so excited and really got into the spirit of the show all morning. When it came to the games, they were playing for a family trip to Alton Towers, including the park and stay in a hotel. She played a blinder in her computer game (and got very very excited to everyone's amusment - her shrieks of "down right down" will be a legend in this house for some time!).. And guess what, they won! She was so so happy. I am into the taking part being more important but I am so pleased for her because she so deserves a special treat. Siblings of sick children go through so so much and the attention tends to be on the poorly one. The whole family get to go with her on her prize. I would never have planned a trip like this around William, but now I have been prompted to, I am so looking forward to it. I will make it work for Hope and Ellie and we will work things out, whatever is happening. It is so great for them to have something really special to look forward to. Meanwhile, we have already watched the show on video 3 times!!! I am so proud of her. Ellie went to stay with her Uncle Chris and 4 cousins and they watched Hope on TV together which was much more exciting than on her own and William's fantastic Granny came very early to look after him as Paul was singing.

It has been a strange Easter. It is the first year I haven't made it to church at all over the Easter period and I really felt it on Good Friday and today. Hope was in the studio rehearsing all day on Friday and, of course, this morning. She had this opportunity for this day only and I wanted her to have it - it was a huge thing for her. We chatted and told stories through the week so did make a point of keeping it in our own way. As for the choccie - we did fit some in but the Easter Egg hunt will happen tomorrow...

How nice to post about such an exciting day and such a happy and special one for the girls!!!

A normal hectic school holiday day - hooray!!!

I have just finished tidying up toys and books strewn all over the house - and its great! This is how it should be with William spreading toys all over the place and taking all his vests and babygros off the radiators. Inbetween treatments he has been a normal mischievous toddler. He played with his train for ages, loading people on and setting it off round the track. The girls joined in with him as well - I tried to get a nice photo of all of them but all I could get was hair as they all crowded in together to watch the train go round.

I treasure every second of days like this, cherishing moments and tiny details such as how William feels when he cuddles me sp tightly face to face and how he smells, every expression he has, all his funny habits. It has made me cherish moments with the girls too where I may not have fully appreciated them before because we always assume we experience the same thing again. No exact moment is repeated.

Excitment is mounting because Hope is going on a TV programme on Sunday. It is a childrens' BBC Sunday morning programme called "Smile" and she has to play loads of silly games and computer games. Somehow we have managed to arrange things so she can do it as it is such a great opportunity for her and the girls miss out on so much because of William. We will be out at rehearsal all day Friday and picked up at 6.00am Sunday! For a professional singer, this could not be a worse time as Paul is committed to Good Friday and Easter services. Paul's Mum is coming to look after William which is great of her. The community nurses will flush him off his TPN and give his IV drugs. I was determined we would work something out for Hope. She will be on the ceiling tomorrow! It is so nice to have something else more dominant in the house this week than William and the next crisis. I really hope it continues. We are still waiting for him to go to Great Ormond street for the tests he needs before he goes for transplant assessment. Everyday the postman does not deliver the letter, I am relieved we have longer before our next planned admission and another operation but also dissapointed because I want to get all the tests and trys of this and that over and done with so we know where we are and what we are up against for the next few months or year. It is a bit limbo at the moment. William always smiles and laughs his way through it all though.

Today, I decided to start a second blog to accompany this one. This will be about the deeper impact of all this on me as a person, my personality, sense of self, spirituality... I decided to put this in a parallel blog as it won't interest everyone. It is listed on my profile but I haven't posted in it yet.

Finding his shadow!

William discoverd his shadow yesterday! It was hilarious - he kept flapping his arms and watching the shadow do the same! He is loving getting out with his sisters over the Easter holiday and they are really bonding more now they have had some time at home together.

Paul and I watched a programme on TV last night about the vicar who lost her daughter in the 7/7 London bombs. I wept and wept my way through the stories of parents learning to cope with their child's sickness or loss, even Paul shed a little tear. I was so moved by her search to make sense of her loss and her ability to draw so much from those she was talking to. We ended up talking about our deepest hurts and fears (over a bottle of wine!). The thing that scares us the most at the moment it how William can so suddenly be at threat from line infections, or even an air embolism, with the TPN. It is especially upsetting that we would have been then ones that would have carried out the action that could cause such an event. This makes everything we do with him so much more stressful, especially when we are tired and not thinking straight! We still have to change William every 3 hours over night and he has stopped sleeping through as well. The fluid through his bowl builds up overnight - you should see that state of him, his clothes and the bed in the morning! I think this is beginning to make him uncomfortable. He also gets a lot of back tracking into his stomach overnight and I think he can feel quite sick. Sometimes I wish they would just do the illeostomy to relieve him but I know this would be detrimental to his transplant outcome if that is where he ends up.

William is continuing to have blood and "coffee granules" (or tiny bits of stomach wall) in his gastric aspirate. We are now giving his IV omeprezole twice a day but may have to add in IV ranitidine as well if this continues. They are trying to avoid it though as every time we go into his line is an extra chance for infection. We have clinic next Friday to review this. We also need to review his weight gain which is actually a bit on the fast side right now! To think he was losing so much before he started TPN - he is now a little bruiser and may need his TPN calories reducing now he has caught up with himself. All children on TPN seem to have little "hamster cheeks". The fat from TPN seems to be stored in certain parts of the body - especially cheeks and thighs. All the parents joke about these features, together with their little pot bellies from the distention.

Archive from previous site

1st March 2006

We’ve been home a week now after 5 months in hospital with William. It has been so lovely to have him home, especially for his sisters who have missed him so much, and have missed their Mum over the last 5 months. William remains on TPN, total parental nutrition, which is fed to him via a Hickman line straight into his heart. This gives him all the nutrition, vitamins and minerals he needs. To get these, he is connected to the drip 18 hours a day. He is unable to eat or drink anything as it makes him very ill and uncomfortable. Unfortunately, there is currently a problem with portable pumps so we are having to use a heavy IVAC pump, designed to be static on a drip stand. We have adapted it to be as portable as possible by rigging up a drip stand onto the push chair, although our freedom is hampered by limited battery life. We are so looking forward to getting a portable pump in a back pack! William is on high volumes of fluid in his TPN to compensate for losses via his gastrostomy and copious watery dirty nappies. As most of this goes though the night we have to change him every 3 hours - and usually his bed and clothes too! We have improved the performance of disposables by enclosing them in plastic pants but the lack of full nights sleep is beginning to show in the rings under our eyes! We are so pleased to have been told today that we have been awarded one day and one night a week respite for William. It will be strange getting used to passing the responsibility for his care to someone else within our home but I am looking forward to a bit of time in the day to do thing for myself and the girls without having to fit it all around William. Even more, I am so looking forward to a full nights sleep.

2nd March 2006

William has a Hickman Line for his TPN and IV drugs, a gastrostomy through which we aspirate 100s of mls of nasty bile each day and relieve wind (as William is unable to burp following a Nissen Fundoplication to cure reflux) and a jejenul tube to deliver his drugs straight into his intestines. We call him “bionic boy” with all his hardware.

William’s Hickman Line enables the food and medication that is keeping him alive. However, it is the line that poses his most immediate danger. A long term central line is always a huge infection risk as any bugs that get in during line access are delivered straight to the heart and pumped around the body. TPN adds further risk as it is full of sugar, fats and protein that feeds the bugs, turning the line into a perfect place to breed. We were reminded of the danger only too well days before William was due to leave the hospital. Within 5 minutes of having his line flushed he became critically ill with septic shock. Luckily we were in the hospital and emergency help was only a few seconds away. However, we are constantly terrified of this happening at home. The first indication that William is going into septic shock is that he shakes like a violent shiver. This is called by “rigor” as his temperature rapidly rises and can make it impossible for him to breathe very quickly. Today, William was shaking again a couple of times and I was so scared he was going into septic shock again. He was happily playing with Ellie and she spotted it and called me over. After a paranoid Mum picking him up, watching him, feeling his forehead and taking his temperature it was clear that he was fine. If anything, he was shivering a bit with real cold as it is so much colder in the house than the hospital - he shivered again as he came out of the bath and it is so hard to remember that this is normal for any child of his age. I am so scared of losing him to septic shock through a line infection as we have seen him come so close. It is always at the back of my mind and I get so worried when he looks a little out of sorts or gives the tiniest of shudders. Unfortunately, William seems to have learned how to shake with excitement when he is playing so there will be a fair few nervous moments to come...

5th March 2006

The children had lovely weekend playing together and watching “Balamory” - William’s favorite and surprisingly addictive to 6 and 9 year olds too! We had a lovely afternoon in the park playing on the swings and slides. The children have certainly adapted well to William being back after 5 months. The girls do occasionally get fed up with the impact of TPN on their lives, especially a we can’t get out and about too much until William comes off and then have to get home in time to get it back up again. They are wondering how we will be able to have long days out to the seaside in the summer. I really hope we will have a portable pump by then but if not we will have to make the best of the days William has his respite nurse to do take the girls out - although it will be sad not to do this as a family. The girls are very good about knowing that Mummy is absolutely unable to do anything else while “scrubbed up” to do TPN and IV drugs.

8th March 2006

I had my first TPN disaster yesterday. Somehow the spike from the giving set got pulled out of the bag, after the seal was broken as I was putting it in. TPN poured everywhere and I quickly re-spiked the bag to prevent this spill. This happened the night before William had his sepsis the week before we left the hospital. We don’t know if this could have contributed to the infection but were advised not to re-spike the bag again so there was no way I was going to - even if it was only a second between the spike coming out and pushing it back again. In that split second I was thinking more about stopping the spill than “aseptic non-touch” so I guess I could have touched the end. If only one little bug got in the bag it would have a field day in all the sugar and protein and there would be millions by the time it was finished. Luckily, we have a spare bag of TPN for just this kind if disaster. It knocked my confidence a bit though and doing the TPN took me ages today.
We had our first respite nurse over night last night. I was so nervous before she came. It felt so strange and I spent ages tidying and leaving coffee and biscuits etc like you do for baby sitters. She was lovely and immediately made me feel OK about it all and able to leave William in her hands and have the first full night’s sleep since we have been home. She cracked the TPN over night nappies...by changing every 2 hours!! Of course, we can not do that every night! It was funny reading his notes in the morning as they read like an inpatient night.

9th March 2006

Today I spent a long time debating whether or not to share our story with local press. I have thought about this before and decided I wouldn’t unless there was a point we could raise and people could do something about it if they were touched by William. At the same time, I really feel that people should know about these children with intestinal failure and what they have to go through and how life is on TPN without food. I was reading the CF Trust message board as it was once thought William had CF and we met a lot of people there and I like to see how they are all doing. There was much talk about a “Live Life Then Give Life” campaign to raise awareness of organ donation and how many people die waiting for organs. More information on this can be found on www.livelifethengivelife.co.uk

William may well need a small bowl transplant and maybe a liver as well. This may be years away or may never happen, or it could be sooner. We can’t predict how long his liver will cope with TPN. He is doing great now and should do for a good while yet but something like a run of bad line infections could change that very suddenly. In the end I decided that a story about William could highlight this campaign. If his story could encourage just one person to donate organs to one recipient that would be so well worth it.
William is back in hospital with a line infection. I can’t believe it so soon. He has been home only 2 weeks to the day. I always knew he would be in and out but had hoped we’d get longer than this! I am so gutted and the girls are heart broken that they, once again, have to go and stay with Grandparents for the weekend while William is in hospital. We hope it will only be for a week or so. It is so weird being back on the ward. Our local hospital had no beds so we were transferred back to Chelsea and Westminster - into the same space we were in for 5 months only 2 weeks ago. When I told the paramedics what William is capable of when he has a line infection they decided he was not best of in transit at the start of one so blue lighted him through London. Such a shame he is too young to appreciate such exciting journeys. I hope there will be no need for them when he is old enough to! I had to leave him this evening as Paul is doing and opera and won’t be home until Midnight. They have had too much of farming them out to people in emergencies and need me when they are upset about him being back in again. It was so hard leaving William. At least he is with staff who know him so well. He pulled out a peripheral line that was giving him extra fluids just as we were leaving. His veins are rubbish so it wasn’t really in enough anyway and was stuck down in hope it would last a day or two. For a cannula that was only just poking into a vein it did bleed rather! I’m glad we were still there or there would have been no while left on his vest at all.

Our local paper are coming to interview us and take photos for our piece to support the Life Life Then Give Life campaign tomorrow. I am very nervous that I am doing the right thing.

30th March 2006

It has been a while since I wrote anything here. William has been in and out of hospital, home for just a day or two before bouncing straight back in with high temperatures. His line infection kept coming back so, eventually, he had to have another op to change the line. Then, 2 days after coming home he spiked a temperature again. Surely not an infection in the new line already! This time it turned out to be a nasty, chesty cold but his temperature spiked so we had to go in and have IV antibiotics while waiting to make sure his blood cultures were negative for bacteria. Back home today so I really hope we stay a bit longer this time. We are due into Great Ormond Street Hospital within the next few weeks for more tests and another operation to collect deep muscle biopsies. I so hope they come to some answers. Poor little man is in more pain these days and we are draining up to half a litre of nasty aspirate from his gastrostomy. When there is a lot there he wretches and is so uncomfortable and unhappy. We were told last week that it is likely he will be going to Birmingham for a transplant assessment following the next lot of tests and one more try at feeding. Right now, I would go for anything that could give William a chance of a normal life rather than being in and out of hospital and tied to drips all the time. His sisters are also so worn down from him constantly being in hospital and never knowing from one day to the next if their Mum will be there to pick them up from school or whether she will have had to take their brother back into hospital again. The constant fear of line infections is also so hard to cope with. I am for ever checking his temperature. I’m sure that a decent run of time without one will make things easier.

The article about William to support Live Life Then Give Life comes out tomorrow. I hope it is honest and OK.

Good News is that we have a portable pump for his TPN now so can get out and about at last - just in time for the Spring and the Easter Holidays.

1st April 2006

Finally, we had a lovely afternoon out at a city farm. It was William’s first trip to the farm and the sheep were a big hit - he was very proud of calling them “baa”. He was more interested in toddling around than looking at the animals, even when it poured with rain. His response to the rabbits was to put his finger straight into the hutch. Hope and Ellie enjoyed feeding the animals. It was lovely and peaceful there and, for a few hours, whilst he was off his TPN, we were a normal family having fun in the warmer weather and no-one would have dreamed William has the problems he does. His cough turned a few heads though. I really don’t know why he is having such dreadful coughing fits. I really hope it doesn’t mean he is beginning to have reflux again as his would mean the operation he had to correct it would have to be repeated. I’m sure it is just the virus he has.

William’s phobia of anything in his mouth is getting worse. He used to love having his teeth cleaned and now will only let the brush go on his lips. This is also causing huge problems with his inhalers. He used to be really good with them but now behaves as if we are torturing him. We are going to have a huge battle when he is finally allowed to eat. He won’t touch anything that remotely feels like food either. It is a battle I am looking forward to though as it will only come when he is much, much better and able to eat and drink again.