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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.