Patience!

Wills is still kind of stable but took a teeny step back today from 20 mls to 10 mls per hour diorylte. His gut stopped working again during the night with only the tinyist of dribble coming through his stoma. At lunch time, he was wretching violently. He can't be sick as he has had a Nissen's Fundoplication - an operation to stop stuff refluxing up from his stomach. I use a syringe on his gastrostomy when it is clear he is trying to be sick and got 180 mls back. This was where all the diorylte had gone where it had mixed with all the medicine that he had been given during the day and a bit of bile. No wonder he was feeling sick. The feed was turned down and Wills was much more comfortable. It is horrible to see him with tummy pains and feeling sick as his bowel has its ups and downs. There is no way around this but it is yukky and unpleasant for him.

Just in the last hour or so a little gas and stuff has passed through the stoma. You easily get pleased with small things on this transplant recovery road. At least his gut is getting there, all be it very slowly. I know there are a few more snakes and ladders to come yet. We are having to take William's feeding very very slowly at the moment and, for the mean time, he is on full TPN which will be increased today to give him some more calories. This is not the direction we are hoping to go in but everyone is confident we will turn around again...I would finish this sentence with 'soon' but I am not going to say it - let's just leave it that we will get there eventually! I have been looking for a perfect song to put some photos to for a Christmas video card. I am beginning to think it will have to be 'Patience'!

William asked me today who gave him his new tummy. I said the surgeon to which he replied 'No, Mr S put it in for me. I said who gave it to me!' I wasn't expecting that so soon. He is a clever little thing and has been lying there quietly listening to all kinds of conversations. For now, I will wait until he asks again, seek advice and start thinking about the best response for him at his age.

A Stable Day

It has been a settled day today. The doctors are pleased that William looks 'stable' now and they hope he will remain so for a while longer before we can all declare that he is over his little blip. His bowel is working again, much to my relief, and we are going to try him with 10 mls per hour of diorylyte tonight with the hope that we can get back to where we were with feeding over the next few days.

Poor Wills is still very sore from his second op and a bit nervous of people coming in to him. He is getting better as he recognises more faces and begins to discern what will hurt and/or be unpleasant and what will be OK. He still hasn't really started playing with his toys or enjoying his books yet but I am sure that will come soon. He is very weak and that is going to take a bit of time to improve on. The physio comes twice a day but he is struggling with sitting unaided at the moment. His cerebral palsy, mild though it is, will slow down his physical recovery but we are working on it and encouraging him loads.

Thanks to all who have been sending cards, letters and gifts. William is so enjoying receiving them. They were on his notice board but we moved them onto the bathroom door today so he can see them better in front of him, and because we were running out of space!

Talking of gifts, I managed to get most of the main Christmas bits and bobs for the children today, thanks to Argos reserve and collect service. It isn't my preferred method of Christmas shopping as I like to make a day of it and enjoy the atmosphere. Birmingham is just too crazy busy to make the atmosphere anything like enjoyable and I can only shop in 40 minute blocks while the teacher is with Wills. Our lovely CHASE nurses are coming for a day next week and that is ear marked for a nice mooch round the German Christmas Markets with a sausage and a mug (or two..) of gluwein! This Christmas will feel very different for us all. The material trappings are very low on our priorities. I am just looking forward to having all my children together with me. We are preparing for our third Christmas in hospital, two in a row. This year, I won't be complaining as this stay is giving us hope for the future. I miss my church and my friends at home but whenever I feel at all down about it I am reminded that there is a family out there preparing for a Christmas without a loved one. A family to whom we have every future Christmas we spend with William to thank for.

Snakes and Ladders

I still have to go back and tell our story from leaving Chelsea to travel to Birmingham. I haven't forgotton and it will appear. However, today I am finishing (and yest I will finish!) that article that was due on Friday and that I got extended to today. 'Wills is settling so I will easily get it done in the weekend, especially as I am here on my own this weekend' thought I. As Em pointed out in her comment earlier, you can not make such assumptions about transplant recovery. This weekend had hardly a settled hour in it.

So, I must be brief and get on. This week is a new week and I know there will be more ups and downs but I hope we at least travel in something aroaching an upward trachectory. I do need to take things a moment at a time but I am more than expecting we will be here for Christmas so have placed a mini tree on our window sill. I did buy Wills a chocolate Advent calender but it is a bit ambitious to think he will be able to enjoy it for a few weeks so I bought him one with little pockets today. Each one has a tree decoration or something from a craft activity in it so he can either add to the tree (which currently has only faulty lights that need returning but that Wills insists stay up until I go and do it and one star on it) or we can do the craft activity. In place of the item we remove, William and I will write a sentence or two about our day. That way, we will have a record of this unique Advent captured ready to remember next Christmas. Today, William wanted to write 'I am sad' to which I added that this was because of his tummy ache from the second op.

They now think that his bowel was kinked and the laparotomy unkinked it. There were also a few minor adhesions. He seems a lot better today, despite the pain from another cut right across his existing scar. He has been very sore but his colour is better. His stoma has not really got going following the surgery and we will all be more relieved when it does. Until that happens, William remains off feed and on 24 hour TPN. At least this should just be temporary. It would have been a fantastic moment when he came off TPN if all had gone well. It will be even more so now. The surgeon said today that, as far as recovery and feeding goes, we are back to the start, the same place as we were on transplant day. They will be taking things a bit slower now but we should get there eventually.

I no longer think of transplant recovery as a rollercoaster. Rollercoasters are fun and exilirating (although I am terrified!) and you know where you will end off and that it will stop. I think of it now as a giant game of Snakes and Ladders. It is unpredictable. You never know if today will see you climbing a ladder with better progress or see you sliding back down that big snake that takes you from one of the squares close to home right back to the start again. You may get to the end with just a few short snakes and ladders, that would be the best you could get. Or, you could hit long snakes and ladders the whole way through. This has been our journey through the first 10 days. I hope we avoid the dramatic ups and downs from now on in.

Update

Wills is back from theatre and the news is positive. They checked everything and found the bowel to look healthy with good blood supply and drainage. There were no holes or leaks but they did find a few adhesions, where both sides of the bowel had stuck together. One of these may have been causing a blockage. His bowel has been cleaned out and they were able to close him straight up so we are back on the ward. The nurse tonight wants to be able to get to both sides of him in case of any post op emergencies so I am confined to sleeping in the bathroom! Small price to pay for having him sorted out this evening. The surgeons were looking very relieved when they came to talk to us. Wills will be sore for a couple of days but we are all hoping things will settle down soon and we can get back to getting his new gut feeding again.

There are still some concerns about rejection but his bowel looks healthy so, it this is the case, it should not be too serious. He will have his routine biopsies tomorrow and Thursday and any necessary action will be taken according to the results. Poor Wills has really been through it and deserves a good run from now. Thanks for all the positive thoughts and prayers. It looks like they are working but we still have a journey to travel.

Back to Theatre

William is back in theatre. He has been much better in himself today as we are draining him from his jejenal tube and gastrostomy so he is more comfortable. The jej tube started draining blood yesterday evening and has been doing all day. The stoma did begin to work, all be it somewhat watery, (thanks for the prayers and positive thoughts) to the surprise of some. We were told we were not out of the woods though and he stoma was still very swollen. We went for a CT scan this afternoon which showed some air in the abdominal cavity behind the stomach. This could be due to a perforation from the jej tube in the new bowel or could be a leak from the join between the graft and the stump of William's existing bowel. They are now looking to see what is going on and trying to fix it.

The scan also showed all of William's bowel to be swollen. The bleeding and swelling could be due to rejection and so we may have to start a more vigorous treatment fort this.The team are fantastic and the surgeon who did William's transplant came in this evening to take him to theatre even though he is not even on call today. We are in the safest of hands.

Poor Wills has been through so so much. I so hope this is a more positive week for him.

Prayers Needed

I spoke too soon this morning. This shows the rollercoaster ride that is the immediate weeks post transplant. At the moment, William's new bowel is not working at all. We have been to X-ray each day but don't know if this is due to a kink high up in the small bowel, some imflammation, rejection (although stoma biopsies have been OK) or it is just being lazy! There is a 90% chance it will be fixable and get going and 10% chance the graft has failed - stats are on our side but, of course, no-one can make any promises. If things are worse of stay the same they may take him to theatre for a laparotomy to see if there is anything obvious going on. Please pray that William's bowel gets going or that we find there is something wrong surgically that can be fixed. We need to be in the 90%, I can't believe we could go through all of this for it to fail.

Another Quick Update (full post later)

Will update properly later but YAY - William's bowel started working itself overnight. His stoma is still very swollen but slowly getting back to how it was. He is still off feed and on free drainage from his jej tube but, at the moment, no need for surgery.
Thanks for the prayers xx

The Best Birthday Present Of All!

It was my birthday today and the best present of all was having all my children with me!!! It was lovely to see the girls. I miss them so much. We left Wills with Paul and went off for lunch and a quick gluwein at the German Christmas market with Mum.

Wills was on good form today but in pain again. He declared that it had been a good day for him but a bad day for his tummy. He was chatty and getting close to his self. His liver enzymes are now improved, a great relief to me and the team. However, his stoma has completely stopped working and we had to stop his feed. Once again, we were down at x-ray. William insisted on taking all his lovely balloons with him, much to the amusement of everyone we passed en route. The surgeon came to see us when we got back and asked me to put the tube that goes into his jejenum, the bowel just below the somach, onto fre drainage. Immediately, right before our eyes. 250 mls of bile poured out. William's stoma is very swollen and the surgeon thinks the end of the bowel may have been punctured in the routine stoma biopsy that happens twice a week. Wills is off feed for the time being and we will wait and see what happens over night. If the stoma is still not working he will have a CT scan and may have to go back into theatre. This is a dissapointing set back but that is all it is. His bowel did work and it will again! It is sad for him that he may have to face another painful operation though.

Minor complications

I haven't yet finished the piece I need to sumbit tomorrow. I have barely started it in fact so this is a quickie.

We did get some smiles today (as you can see in the post below) but it has been another day full of reminders that the recovery from a transplant can be unpredictable and rocky at times. Wills woke this morning in much less pain but very drowsy and breathing over 60 times a minute. I was a tad worried and, once again, the answers were in the blood test results. He has 'acidosis', his blood is too acidic. He has had an infusion of sodium bicarb to correct it and is now having a phosphate infusion as his levels are low. It is normal for the body to need some time to rebalance after transplant. Wills is just taking a little longer to get there. His kidney function is a bit down, not surprising given the huge amount of meds he is on. One thing that is confusing the team is that his liver enzymes have taken a bit of a high jump. They didn't do anything to his liver so we don't know what that is all about. I am anxiously waiting the repeat test results in the hope they are not so bad. If they are, he will have an ultra sound tomorrow in case it is a surgical complication.

A quick google (always dangerous in these circumstances) threw up the possibility of graft versus host disease. This is unlikely as William had another stoma biopsy today and that was fine. His output is virtually non existent though so I am concerned about disruption to his bilious flow. I must stop worrying as this could all be nothing. I do rather think it may have something to do with restarting TPN and having fat every day. We only had it 3 times a week to protect his liver. He is not on the liver protecing drugs either (the lovely 'urso'). It is hard not to worry about possibilities and just take it as it comes. We are in a specialist liver unit so in the right place. Trust William to throw up his own unique little complication!

Pictures of an Amazing Week

Wednesday: On the way to Birmgham and pretty unwell too!

Thursday: Shortly after transplant


Friday: The morning after transplant

Saturday: First sips of water from a sponge

Sunday: Sipping from his new Thomas cup

Monday: School wasted no time in getting William going again

Wednesday: Distended and in lots of pain

Thursday: One week on, a few minor complications but doing great! First smile in a week!!!

A Bit of a Bad Day

This is going to be another quick blog. Partly because I am exhausted and partly because I want some time to reflect on the week that has just passed before I fall asleep - reflections which will take me nicely to the point at which I left our transplant story, some of which I am sure will make it onto this blog tommorrow. I also have a piece of commissioned writing to get done by Friday.

So, a brief update. Wills has had a bit of a bad day today. All is OK but he has been in a lot of pain and distress. He was blown up like a football all day and had a lot of air in his tummy. He was in so much pain we had to make sure all the air was in his bowel and not around it - i.e. to rule out a perferated bowel. This created some worrying moments of deja vu as we were in x-ray at about the same hour as we were exactly a week ago for the same reason. I couldn't believe for a second that we could be in the same position a week apart, the same that is except with a different bowel. Thankfully, this time there was no perforation, just gas and distention throughout his gut. We were planning to up his feed by 5 mls a day but we have stayed at 10 mls for the third day in a row. He is doing OK but his gut just needs a little more time to really get going. His stoma losses are a bit irratic and rather green and watery. His bowel is already performing heaps better than his old one ever did and will carry on improving.

When the blood test results came back this afternoon, it became clear partly why William has been feeling so rough today. His tacrilimus level was far too high which would have made him feel very unwell. His IV has been stopped overnight and he will have half the dose tomorrow. It is going to take a little time to get his levels stabilised and a regime worked out for him.

The other thing we were warned about today is rejection. William has no signs of rejection yet but it is early days. The peak time for initial, early acute rejection is 10-14 days. We are on day 6 so next week will be crunch time for that. There is no reason why William should get any rejection but it is very common in small bowel transplants, happening in about 80% of children transplanted and it is treatable.

As I write, William is much calmer but stil fitful in his sleep and waking frequently. His sleep patterns are very disturbed at the moment. I am hoping he settles and sleeps well tonight and wakes up more comfortable and feeling more like himself tomorrow.

I haven't mentioned our donor for a while. I now know a little about the donor and family. Of course, this is not the topic for the blog. The transplant co-ordinator explained the process for writing our thanks and advised that we leave it a month or so to enable the family to grieve, for us to come to terms with William's transplant and for Wills to get better so we have more to thank them for. I do feel bad that we have this tremendous gift and I haven't said thank-you but I trust their experience. I have chosen a card and have it ready in my journal, together with the piece of paper I was given containing the details of our donor. The family are in my thoughts and prayers tonight.

Getting Into Routine

We are slowly beginning to settle into a routine here. It still seems a little surreal but we are getting used to the people and way things are done here. William's sleep is still disturbed but we are getting closer to his normal day and night patterns. He is in a lot of pain and discomfort, mainly from the operation but also because he is a bit colicky with the introduction of feeding. His stoma output is a bit on the watery side and a bit high (although less than half of the best days prior to transplant) so we are sticking at 10 mls per hour for now. He has not really fancied his water today, probably because he is a bit gassy and bloated. This is normal following any abdominal surgery, let alone a transplant. It can be a bit disheartening as it is not unlike his reaction to feeding in the past. However, there are huge differences. He is uncomfortable but he is absorbing it. These are symptoms of a bowel getting going again after a huge trauma of being removed from someone and put into someone else. No-one is keen to push William's feed too quickly which is no bad thing. We will take things slowly and steadily and may have to go back a step or even stop feeds for a while if that is what the bowel needs to move forward towards eventually coping with full feeds. He will get there but we need to be patient.

We had a lovely surprise today when a big white box arrived containing a lovely Thomas balloon from Becky, Adrian, Seren and Dylan - thanks so much! William had a few cards too which brightened him up. He is beginning to get interested in things again and loved his time on the computer with the teacher. We also made a dinosour from a 'Charlie and Lola' magazine. It is nice to be doing things with him again. He tends to tire during the afternoon and the pain sets in more then. When he is very sore with a gassy tummy I have to sit with my hand on it for him.
In fact, his is going to be a quick blog as he is now awake and wanting Mummy's hand now. I will continue the story tomorrow,

One Step at a Time

Taking things one step at a time is something I have never been very good at doing. I always want to know what is going to happen next and when and how. Today, I am learning that a recovery from a transplant is one of those situations where you have no choice but to take things as they come. No-one can predict what is around the corner. It is a lot like how things were when the children were premature babies in the neonatal unit. Things go well, then they may take a little step back.

William is OK and all is going very well. His temperature has been down today, much to my relief. He had his first stoma biopsy today. The doctor puts a thin tube with something I am going to call the grabber at the end of it and pulls out a sample of tissue. This will be done twice a week to begin with to monitor for any signs of rejection. If there are any, they will move to an aggressive treatment. So far so good, Williams biopsy was normal today!

We have had some minor blips. William's tacrilimous (the main anti rejection drug) levels have been too low so he has been put on intravenous (IV) 'tac' for a while until his gut is ready to absorb it all. This is a slow continous infusion of 1 ml per hour. William's feed is up to 10 mls per hour. The great news is that there is still no sugar in his stoma output so he is absorbing. However, his stoma output is, apparently, too high. To me, it is great at around 400 yesterday (a bit more today) where as we were getting 2 litres from his old bowel! The surgeon wants his output to be a closer match to the feed going in, only 120 mls yesterday. The 'high' output has also led to some of our old problems of low potassium levels and dehydration so Wills is not yet ready to shed any of his 4 IV pumps and 4 IV syringe drivers just yet. He is in a proper tangle with it all. Every now and then, his stoma stops working for a while (there is a medical term for this but I have forgotten it) causing painful spasms. This is something they have seen before and will pass but his feed has to be stopped while it is happening. It may be that he goes back to 5 mls per hour tomorrow. We have been told to expect two steps forward and one back. As long as we keep going in a forward direction overall, I will be happy.

My thoughts have been with our donor family today. I am keen to learn more about William's donor and write and initial thank-you. It is beginning to feel like we have received this amazing gift and I can't really fully enjoy it until I have said thank-you to the people who gave it to us. I imagine they will be preparing for the funeral this week and I want them to know we are thinking of them. This is the side I still find incredibly emotional and get very teary whenever I think about it. I have a feeling a lot of my emotions from the past week, and before that, will pour out while I am talking to the donor coordinator, hopefully tomorrow. Paul has now gone off on the tour to Norwich and I think it is all beginning to sink in. The last few days have been so surreal that I almost think I am dreaming sometimes.

Thanks Rebecca and Rebecca for asking about sending things to William. He loves getting post so will definately appreciate it. The address is:

Ward 8
Birmingham Children's Hospital
Steelhouse Lane
Birmingham
B4 6NH

Now where was I with our story...ah yes..

So, there I was, standing in the operating suite being told that we had a donor for William. That is one of those scenes I am never going to forget. It was so strange. We had only been having a light hearted discussion about this scenario a couple of hours previously and here it was happening. If I didn't know better I would have thought it was a set up. I laughed, cried, gasped. I just didn't know what to say. William had been so unwell that afternoon and I couldn't believe what was happening. I didn't want to believe he would get his transplant. I was so worried we would get there and be told he wasn't well enough to go through with it. The team were not going to discuss whether to wake William up to go or to leave him unconscious and transfer him in an intensive care ambulance. He had already had two aneasthetics that day and there was some debate over what was safest. To keep him under the second until after the transplant or to wake him and give him a third first thing in the morning.

I left them to their discussion and went back to the ward to sort out the mountains of clutter we had accumulated. My feet were not touching the ground. I didn't know what I was doing. I ran into the ward. The nurses already knew as there had been a lot of discussion before I was even told. Everyone was excited and nurses from the other ward, where we had been during our earlier period of isolation, kept coming over to wish us luck. I shouted to the other long term parents I had been sharing my life with over the last few weeks and they came running with hugs and offers to help. I don't know what I would have done without ML and J. My head was in shreds and I had no idea what I was doing. I just wanted to get to Birmingham and find out what was going to happen. I also wanted to see William. It seemed so strange that all this was going on and he was alseep upstairs. ML and J helped me pack a few bits on top of the pre-packed transplant bag. I was going to take it all but was told to only take essentials as they wanted space on the ambulance in case of any emergencies. As a result, there are lots of things we really could do with among the clobber retrieved by Paul's parents.

It seemed like ages before I was called back up to William in recovery. They had decided to wake him but we were going in an emergency ambulance with a nurse and anaethetist, just in case. The ambulance crew turned up shortly after me. I didn't realise we were going from there so ran down ot get my stuff - ML and J were life savers again, helping me up with it all. When we got back, the crew had gone. They had been pulled from our job and another crew were due in 5 minutes. That turned out to be nearer an hour! I was worried as I knew the op was scheduled for 7 am and time was passing fast. I really wanted to get going. The surgeons who were about to operate on William stood by with support. Finally, the crew arrived and we loaded up.

I was told about the call just after 9pm and we left after midnight. We needed to get to Birmingham ASAP so the blues and twos were used. There was a traffic jam on the M1 and it was exicting seeing traffic move to the side to let us through. One of our favourite nurses which made me feel much better about it all. The journey seemed to take ages. William's heat rate was high and he was a bit warm. I was still so worried that they would not think him well enough for transplant. As I said at the beginning of today's blog. I hate not knowing what is coming, especially when there was so, so much at stake.

A new roller coaster ride

It is all really exciting - William's new bowel is absorbing!!!! His stool output was tested for sugar and there is none there so Wills had absorbed all the diorylyte. His stoma output is fine and looks normal, not like the coloured water he used to loose by the litre load. All is going very well. He is now on a special feed which he will be on for he next 3 months. He is on this 5 mls per hour and is also on 10 mls per hour of water which he drinks through sponges or straws. It is wonderful to see him tolerating feeds. The feed will now be gradually increased and his IV fluids weaned down.

We do have a few little worries though. William's blood pressure is a bit high but he is now on medication for that and it is settling. He needed a bit of oxygen this morning but it looks like it wa due to being a bit overloaded with fluid. He also had medication for that with good effect. The main concern is that he has had a highish temperature all day, around 38 which is not too bad but could be signalling the beginning of infection or rejection. It is unlikely rejection because it is a bit early for that and his bowel is performing so well. However, 80% of children who have small bowel transplants do experience some level of acute rejection so we are no means home and dry there. Time will tell if it develops into anything and, although he is doing so so well, I will remain a bit anxious until his temperature settles. The liver consultant on this week does not let you say they are doing well because you never know what is around the corner. We are learning to ride a whole new rollercoaster now but, so far, the ride has been pretty smooth. William did not arrive in the best state for a transplant, as you will see if you read on, and a bit of infection is probably to be expected.

William is still a bit upset by it all and is still speaking in 'gruntish'. It is a lot to take in and I think he will feel a lot better when he is off the morphine. We now have our cubicle so I am making it cosy for us. We have a bathroom which is already taken over with dripping washing. The cubicle walls are covered with a lovely mural of dinosours. It is really lovely, which is just as well as we may be here for some weeks. We are settling into our 'home' and getting to know the nurses and some of the other long term families. We came back to the ward on Friday afternoon so have settled in during the weekend. Tomorrow, we will begin to learn the daily and weekly routine here and get into one for ourselves. At the moment, William's sleep pattern is totally out of whack. He tends to dose here and there and day and night is the same.

Now, to get back to that cliff hanger from yesterday... Oh, and just before I do. My mobile phone is not getting reception in our room. As William is in isolation, I will be there most of the time. I will get texts and messages when I step out to get meals and make cups of tea etc but won't get them straight away.

I got back to the ward to find the junior doctor on the phone. I asked what was going on and she said the consultant was coming to see me. I am not at all good at sitting and waiting when I know something is going on so I hung around to try and find out. The registrar arrived and started looking at the x-ray. I asked if I could see too and he showed me what was clearly quite abnormal though I had no idea what they could see in it. He told me that William's abdominal cavity was full of air, indicating that his gut was perforated somewhere. It was a surgical emergency and the surgical registrar would be down soon. Next, our consultant came and explained it all to me. William's gut had most likely been torn when they pulled out the back of the old gastrostomy. The surgical registrar came and said he was not sure if William would need an immediate operation. He would be back in a couple of hours with the consultant, the same one who dilated William's illeostomy earlier in the day as well as forming it back in January. The anaesthetist then came to discuss pain relief for William through the night and start him on morphine as he was in a lot of discomfprt. He looked terrible and I was a bit dismayed to hear her say there were no immediate plans for surgery. William's TPN was stopped and he was put on fluids. He was already on sufficient antibiotics because of his line infection.

About an hour later, the surgeon came and had a feel up William's illeostomy. He found it had come away from the abdominal cavity and was torn. William had not had any illeostomy losses since the scope and usually looses a couple of litres (well he did, not any more!). Some of this was draining from his stomach and jejenal tube but a lot could be escaping into his abdominal cavity. He explained that William needed an urgent operation which would take place as soon as they were ready in theatre. He was to have his stoma revised - about 5 cm of bowel removed and a new stoma formed. It was a big op of about 3-4 hours and he would have to go to the High Dependency Unit afterwards.

It suddenly occured to me that he could not be called for transplant in the middle of all this. I rushed out to ask about it and found the gastroenterology consultant talking to the surgeon. He gastro consultant said Wills would have to be suspended from the transplant list for a couple of days but the surgeon was keen for him to remain on and said he would have no concerns about him going for transplant the next day. If he were called during the procedure, he would make good and send him on his way. I still felt William was in no fit state for a transplant but, as the gastro consultant said 'We will still be waiting in 6 months time!' - that has got to go down as one of the famous last words of my lifetime and I can't wait to tease him about it!

I took William up to theatre and to the anaesthetist who had earlier come to sort out pain relief. She had gone home and was on call, luckily she had enough time for dinner before being called back in for William's op. As it was now evening, we were up in the main theatres, rather than the paediatric one, so we had to take him up in his cot. There were loads of papers and magazines behind it so I decided to have a big sort out before settling down to eat some tea. I had only just got going when a nurse came in and told me that the surgical registrar had called to say they want me up in theatre. William was OK but they need to talk to me. I thought they may want to ask me to sign consent for something else they had discovered needed doing or perhaps the tear was not as bad as they thought and we could get away without the op. As we got out of the lift, the registrar was walking towards us - in scrubs but not in theatre! That was when I got the BIG news. They had put him to sleep but had not started the op...because they had received a call from Birmingham to say there was the potential for William to have his transplant. They were in discussion with the surgeon at Birmingham about what to do about it and they felt I should be involved. When I got into the theatre suite, I was met by the consultant surgeon who told me they had decided to send William up to Birmingham and take it from there.

Thirst and The Beginning of the Story

"I'm thirsty" and "It hurts" have been the only things William has had to say today. He is very sore and mainly talking in wines "Uh Aagh" meaning "it hurts" and so on. He is allowed 20 mls per hour of water to sip and that has been the absolute highlight of his day. No matter how rubbish he is feeling, he will always perk up for his water! Paul and I both searched Birmingham for a Thomas cup and bowl for him to use to dip his sponges into the water. Paul finally found a lovely set in Argos, just 5 minutes away! Just in case, I got him a space man beaker with a built in straw so he has been sucking on that too. It is lovely to see him taking something by mouth for the first time in 3 years and it was fun buying him some special things to drink and eat from when the time comes. It wasn't such fin battling with the crowds though - Christmas shopping is well and truly on the go in Birmingham.

William is continuing to do well. Of course, he is a bit sore. He hasn't really wanted to do anything except lie and look around. He hasn't even wanted Thomas stories and only watched a video once. He has, however, wanted water whenever it was offered and demanded it when not.

His blood pressure and heart rate have been a bit high and he is breathing rather fast. I am sure the pain is contributing to that. As I am writing, his oxygen levels are on the low side of OK so he may need a little oxygen wafting in his direction. This is probably due to a combination of the morphine, pain and swelling as the new bowel gets settled in and starts working. It is working too. It is funny the things that can excite you. Paul and I have been very excited to see William's stoma move to let the stool out. His old one never did that and we had no idea you could see the peristalsis in the stoma. As his bowel is clearly working William was able to start a tiny bit of feed today - a continuous infusion of diorylyte running at 5 mls per hour into his jejenal tube. He seems to be coping with that fine. His stoma losses are still very watery but there are semi solid bits within it. Already, his new bowel is doing great. It will be a slow process building up and establishing feeds but he has got off to a great start.

The main concern today is that he has a bit of a high temperature. I am sure this is all due to the operation itelf but we have to make sure he isn't brewing an infection. He anti-rejection drug level is too low so his dose has been doubled. If the level is still low on Monday he will have to have the drug intravenously until he is able to absorb it more effectively. These are all teething problems really but have served to remind us not to get too far ahead of ourselve because he is doing so incredibly well. We still have a long journey to go on and there may be bumps along the way.

William is on heaps of oral and IV drugs. Half of them I have never heard of. He is also on four different fluid drips. It is strange for me to go from being totally on top of his condition and treatment and doing everything for him to sitting watching a complicated regime that I have no idea about. At least I can still change stoma bags and have the excitement of giving him his oral meds and water. So far, the oral ambisome is his favourite. He did refuse to take the tray full of 8 syringes at bed time. I'm not surprised, it must have looked daunting and he was very tired.


So, now back to the beginning of our transplant story.

There was going to be quite a blog about Wednesday before we had any idea that we would get the call for William's transplant. The Chelsea and Westminster team were keen to have a look at William with the endoscopy to see if there was any obvious inflammation that could be contributing to his 'leaky gut' and treatable with steroids. There was a cancellation on Wednesday morning and so we found ourselves off to theatre at 9 am. I was told it would only take half an hour or so and was getting wuite concerned when William was still there three hours later. Someone had seen the gastro nurse specialist, dressed in scrubs, rush to his room to collect a box and rush back. Later, he came to see me to explain that they had seen a nasty blackened piece of plastic backing from a gastrostomy tube that had been lost in his gut for over 2 years. Having found it, they were keen to get it out so the surgeon had been called in. Of course, if William's gut had worked properly this would have been passed through rather than just sitting there but it had finally found its way close to the illeostomy. The illeostomy itself had narrowed causing a 'stricture' and that also needed dilating. So, William's endoscopy had turned into a minor surgical procedure.

He was slow to wake after a longer aneasthetic than planned. When he did wake, he was in extreme pain. He was given a shot of morphine and dosed a bit. However, throughout the afternoon he became very unwell with a very high heart rate above 200 and very sweaty. It was the gastro grand ward round and the consultant took one look at him and sent him off to x-ray. He had a chest and abdominal x-ray and we were told to wait while they looked at the pictures. Soon afterwards, the radiographer came out and told me their doctor had looked at them and was on the phone now to William's doctor and we were to return to the ward immediately. I could tell that something was pretty wrong...

Quick Update

Thanks for all the lovely comments and text messages. It is wonderful to know how much suport we have. William is doing really well and is out of intensive care!! He is such a little fighter. He is still in a lot of pain but is nodding and shaking his head and saying the odd word here and there. He is sleeping most of the time but we have had a Thomas story and he has snoozed through a couple of videos. I will tell the whole story but I know people are anxious for the latest news for now.

Wills is taking his nystatin medicine orally and loving how it tastes!! It is the first thing he has taken in his mouth for 3 years!!! I tried to put up some pictures but blogspot is not behaving. I will add them when I can.

Paul and I had no sleep on Wednesday and only had a chair to snooze on yesterday so we are pretty tired. I am going to sleep pretty soon. There are no cubices on the ward until because they have done loads of transplants lately. For the weekend, Wills and I have a 3 bed HDU unit to ourselves. We should get a cubicle early next week but William is in isolation so we will have to be by ourselves in any case.

From tomorrow, I will start updating and telling the story from the beginning. Our call came at an absolutely crazy time when a lot was happening to Wills so there is quite a story to tell.

Our call came when we least expected it!!!

Someone told me a couple of weeks ago that we would get our call for William's transplant when we least expected it. Well, yesterday was quite a day!!! I will post properly later with the whole story but for now, the big news is that William is in theatre having his new tummy. He went in at 7am this morning and we are expecting an update at about 12.00pm when they will be half way through the op. I am excited, happy, relieved, worried...and very sad and thankful to the donor family. My thoughts are with them.

Just a quickie...

It has been a busy day. The lovely Emma from Live Life then Give Life called me this morning to ask if I would speak to Channel 4 news about the opt-out decision. Within a couple of hours, William and I had been visited and interviewed. I switched my phone on to find a message from ITV news who were also hoping to come and interview us. They ended up sharing Channel 4's footage and we ended up on both lunchtime news bulletins. ITV were planning to interview us in the afternoon for the 6.30 news but called to say there was enough material among that Channel 4 had recorded and they are using that this evening so watch out for us.

The channel 4 piece can be seen here The ITV piece seems to be on their news website but I can't click on it at the moment.

Our interview was over in time for me to see the lovely Emily and Ubaid's wonderful Mum on This Morning. Well done both of you. You were fantastic!! Emily was on the ITV lunch time news too looking as professional as ever.

Let's hope all this awareness gets people thinking. This Morning ran a pole and 68% were in favour of the law change. I hope these people have now registered as donors!!! It would be fantastic if some of those on the waiting lists received their organs as a result of the current media attention.

Presumed consent for organ donation is rejected

Transplants and organ donation are on the front page of The Times and The Telegraph today and that can only be a good thing for us and everyone else waiting for transplants.

Last year, 3100 transplants were done in the UK. That seems a lot, until you read on to discover that 10 000 were waiting to get that call, giving it a 1 in 3 chance to have a transplant if you were waiting for one last year. Sadly, 400 people died as a result of being one of the 2 who were never called.

Gordon Brown was hoping to introduce a change of law so that, rather than being registered as an organ donor, individuals could register their preference not to be a donor. Anyone not doing so would carry 'presumed consent' although no organs could be donated against the wishes of the family. This would have led to more organs being available for transplant. I reflected on my feelings about this some time ago and wrote the following:

WAITING FOR SOMEONE TO SAY YES

Within the next few weeks, a Government task force, created to assess the possible impact of a change in the legislation surrounding organ donation will announce their recommendations. Throughout the year they have been debating the move from the current ‘opt in’ system of registering as a potential organ donor or carrying a donor card, to ‘opting out’ or ‘presumed consent’ whereby everyone would be seen as a potential donor unless they register or carry a card to express their desire not to. The debate was fuelled by statistics such as the 1000 or more people who die each year while waiting for a suitable organ to be found.

Joining the transplant list offers you a nothing more than a hope that you may, one day, get that call to say your life saving operation will be going ahead. As time goes by, you become sicker, the transplant becomes all the more urgent and the uncertainty becomes all the harder to bear. At least, that is my experience of being Mum to a four year old child currently waiting for a transplant he very desperately needs. We joined the list a few months ago but have known for three years that it would become necessary sooner or later.

Before we joined the list I was an avid supporter of the move to an opt-out system of organ donation. Amongst all the complicated and emotional thoughts and feelings I have had spinning in my head since we joined the list, I have realised my ideas about the opt-in or opt-out debate have changed. It is half-term this week and the Christmas holidays are not too far away. More transplants happen in holiday time. I have to reassure myself with such facts but I struggle with doing so as I am only too aware of what the thing I hope for every day means for another family. Last week, I shared how upset this makes me and was told to remember that I am not waiting for someone to die. I am waiting for someone to say yes. I am waiting for someone to give my son the best gift he will ever receive. A compulsory donation may come quicker but we would be praying and waiting for something very different than for someone to say yes to making that gift.

A strange 48 hours

The last few days have been strange. It is likely they are going to take William's new line out tomorrow. I say likely as that is the way things are today. Yesterday it was definate but his blood tests are improving suggesting the antibiotics are kicking in and at least supporting his body in coping with the infection if not killing it off. I am waiting to hear if this is enough to convince the doctors to leave the line in for a bit longer. They are applying for funding and permission to try the immunoglobulins and I feel we should at least try something new before pulling another line when it is so likely a replacement will be infected as quickly as this one was.

What was particularly upsetting is that tomorrow is 'D's' funeral and I really want to be there to say goodbye and support his family. If William goes into theatre I will, of course, have to stay here. Either way, I think tommorow will be an emotional day.



The last 48 hours have been emotional. I was almost in tears when I was telling the ward sister here about the little girl (who from now on here I will call Sally but it isn't her real name) getting her transplant. From day to day, I pretty much keep a lid on my emotions. Hope and Ellie have both asked me about that but it is important to keep going. It is when other people are going through things that I tend to let it out as it is more controlled that way. Once the floodgate is up I, of course, let it all out in spectacular fashion and feel much better for it. I know this will happen if I make it to the funeral. It will start off with tears for D and the family and once it has started it will all pour out. Sometimes I feel guilty for that but I know he wouldn't mind. He would have had some funny one liner to say about it I am sure as that was his style. His wife is hoping there will be some chuckles through the tears tomorro as he was such a funny man. There will be I know. The strange thing is that his cancer really bought his personality out. I didn't know him as the man I loved and will miss so much before he had his cancer and started sharing this incredible bond with William.



Of course, Sally's transplant has also been emotional for me. She had a perfect match and is doing really well. I am so pleased for them but I do so much want that for William. I felt a lot better for the blog comments - thank-you. I felt others sharing their experiences with this one gave me permission to feel this way and to be able to communicate it too. I really felt that William could not be called for transplant for a good long time after Sally as it would just be too much of a coincidence. Thanks to 'M' from transplant kids for telling me that someone had a transplant the day before hers and that she knows of weeks when they have done 2 or even 3 bowel/liver transplants. I'm sure there is still the same chance he could get called now as in 8 months time. Everyday is as likely as any other I guess. It is so hard to live this day to day life though. It can be exhausting. I will be so glad to get home and have some normality.

Mixed emotions

It has been an emotional few days. On Saturday, I received the very sad news what a friend of ours died suddenly of complications with chemotherapy for bowel cancer. We all knew his prognosis was not good from the onset but no-one expected him to die so suddenly so soon. He had a very special bond with William as they both had their stomas and a lot more in common than William would have understood. William heard me telling Hope and Ellie and knew exactly who I was talking about. His immediate response was "Who will I watch the football with now?" (the Kick London footballl coaching we are involved with together) followed by a pause, then "I will miss him!" I was surprised how much he seemed to understand. We are all so so sad and will all miss him. He leaves behing a wonderful family who are in our prayers.

William is muddling along but his bloods are not too good. He also keeps spiking temperatures so the difficult decision has been taken to remove his new hickman line on Friday and put in yet another on Tuesday. He can't carry on having so many infections and the team are not at all happy about things. They are looking into some options to try and stop his gut leaking so much. I am hopeful but these treatments are all expensive and experimental and they have to put a case to the Health Care Trust to get permission and funding to try them. They will not cure him but should help him get to transplant.

We have had some good news today. The other child here waiting for an urgent liver and bowel transplant got her call today! She was discharged from hospital here and got called 15 minutes after getting home. I am very very pleased for them as they have waited 8 months. I would be lying if I said there wasn't a bit of me feeling desperately dissapointed that today's call was not for William. I always wanted this little girl to be called first as she has been waiting so long. It is a strange feeling to be so pleased for someone but feeling a bit flat about it at the same time. As news has travelled, everyone has first expressed their excitement and then how they hope William's call comes soon. I kind of think it is unlikely as children's transplants do not happen all that often and one is going on now. Of course, we don't usually know when they are doing transplants and so can't think like that on any other given day. They did 2 transplants in the week we were there for assessment so it doesn't necessarily follow that there can't be more than one in a relatively short time either. Someone once posted in a forum that they always took peace by thinking that their time will come when it is right for them. It was right for this child today. She was home from hospital as well as she gets. The right time for William will come too one day.

Would you say yes?

We were told today that William is too unstable to go home for the time being. The team don't think that he is actually clearing his bugs that are escaping from his gut. Sometimes we get one in a blood test, sometimes another and occasionally none but they think they are all there as his intestines are literally leaking their contents into the blood. We have tried every available method to control this. William was allergic to the only one that worked! Although we remain hopeful that we can get some normality with Hope and Ellie soon, there is a strong chance that he will not become well enough to go home until he has had his transplant.



The lovely Emily has written about the issue of children's transplantation and organ donation on her blog and is encouraging debate (you have to look to the post below her lovely wedding photos from this time last year - those smiles show what a transplant can do to a family :-) ) I would be interested in your thoughts. If you were faced with the unthinkable, would you give your child's organs for transplant? What about if it were your child who needed a transplant? The lovely Pauline, from the Donor Family Network told me how positive it can be for people to donate their loved one's organs - to be able to say yes to someone like us. That is what we are waiting for, someone to say yes.



This is what I posted in respsone to Em'sblog:

I think this is something that needs a lot of awareness to be raised. If families could bear to think of the unthinkable for a minute and prepare their thoughts and ideas then it would be easier for them if that ever happened to them.

I really struggle with the notion that I am waiting for someone elses child to die in such a tragic and sudden way but there are two children in this hospital at the moment, both of whom desperately need their transplant. At every ward round we are being told by doctors that we are at the end of the road. All options are exhausted. There is a high chance that William will never now be stable enough to go home until he has had his transplant. We were told that only 25 children donate organs on average each year. We were also told that there are about 3 'events' a year that could lead to William's transplant and, of course, he may not be the only child waiting for the same organ on that same day.

My thanks go to Ubaids' lovely parents for being brave enough to highlight this on our behalf.

Bugs, bugs and more bugs!

We are not home! William got more bugs in his line so we are here for a while longer. His blood tests are not too stable and he is needing more potassium and is back on TPN for 22 hours a day. We need things to be a bit more stable before we can think of home. The main thing the doctor had to say was that we need his transplant and we need it ASAP!

Up and Running

William has finally finished his antibiotics and we are slowly getting on top of his fluid balance. He had a bit of a dip in his blood count yesterday so had a transfusion of red cells. He is lovely and pink now and, as you can see, full of energy. We are hoping to get his fluids and electrolytes stabilised and home at the beginning of next week. We are keeping everything crossed that he doesn't get any more infections in the mean time.

Goodbye to a very special friend I hoped I would meet some day

This picture is the gorgeous 'Toria' with her beautiful son, Edward. I have taken it from her blog If you read the comments on my blog you will see some of the lovely words of encouragement and support she posted there. I never met Toria but hoped I would eventually. Now, I never will. Last night, Toria lost her fight with cystic fibrosis. She was 23 years old. I am so sad and am typing in tears. I only knew her for a short while and only through blogs but I will miss her so much. My love and prayers go out to Edward and her husband, Luke.

Breathe easy Toria xxxxxxx

Robyn's Rainbow

William had his new line in yesterday. It was a really traumatic time for him as he is now terrified of 'special sleep'. He then slept most of the day but woke to a lovely surprise - a fantastic Thomas balloon from Robyn's Rainbow, run by Live Life Then Give Life (LLTGL). He was SO happy. It really put a big grin on a very sad and fed up face. Thank-you to all at LLTGL and to all Robyn's family and friends and everyone who has donated. I hope the smiles in these pictures show you how much it is appreciated. Please read on to find out more about Robyn's Rainbow and how you can help send rainbows of hope to people like William who are waiting for transplants, or having a tough time after receiving one. I have taken this from the justgiving page so you could just go there and read it for yourself.

What is Robyn's Rainbows?

Robyn’s Rainbows™ is a charitable initiative run by Live Life Then Give Life to offer support to very sick or struggling members of the transplant community.
Following nominations from the public, Live Life Then Give Life sends struggling members of the transplant community a small beacon of hope in the form of a balloon, to let them know they are being thought of. The aim is to create a rainbow on the darkest days for those in need; to remind them that they are not alone and that sunshine might be just about to break through...even just to bring a smile to their face.

Who was Robyn Tainty?

Robyn was a bright vivacious young woman who happened to be born with the genetic lung disease, Cystic Fibrosis. Despite a lifetime of poor health and intensive treatment, Robyn never let her illness get in the way of living her life; moving in with her boyfriend, studying for a Masters degree and adding joy and laughter to all those around her.
In 2005 Robyn was told her lung damage was so severe that a double lung transplant was her only hope of survival. Robyn remained optimistic, fought hard to raise awareness, and had plenty of hopes and dreams for her future after a transplant. After more than 2 years waiting and hoping, Robyn lost her battle for life in September 2007, aged just 24.

Why is it called Robyn's Rainbows?

During her last few months Robyn spent a lot of time in hospital, during which Live Life Then Give Life sent her a balloon to make her smile. One of her best friends Matt commented later:
“I don't know if Robyn ever told you, but she loved the balloon that you guys sent! It was sitting very proudly next to her bed, from the day she got it, right till the end.”

How can I help?
It's simple. By raising money and raising awareness! Just £12 will allow us send a Robyn's Rainbow to someone in need . We want to be able to support as many people as possible and to keep them smiling whilst they fight and hope, waiting for the call that if it comes, will change their life.

Robyn’s Rainbows is dedicated to Robyn and the rainbows she brought into other people’s lives...just by being there.

http://www.justgiving.com/robynsrainbows

Time for a cuddle

William has had a horrible weekend with peripheral cannulas (small plastic tubes) supplying his fluid whilst his Hickman Line is out. The amount of potassium and the antibiotics he needs are very tough on the veins and it has been very painful for him. His new line should be in tomorrow morning.

The main reason for this blog was to share these lovely pictures.






You never know what you will see out of your window. These guys cheered us up this morning!

!

Line Out

William had his line out today. It was a tricky procedure as it didn't come easily. The surgeons were none too keen to take it out as IV access is becoming a problem for Wills. Once again, I was reminded how badly he needs his transplant. There is another little girl in here at the moment who is waiting for a liver and bowel transplant. Her parents have been told that she needs it urgently as well. Both children need it right now really, as I expect to most of the children on the liver and/or bowel list, given that it is a last resort option with bowel transplants still relatively new and complicated. It is a worrying and stressful time for us all. I think things will feel a lot better once we get home. It is a vacuum in hospitals and things feel a lot more intense.



I have put some more images up on the arty-farty blog

Living in A Box - the photos

Here is William making his box home and a couple of other shots of him being entertained in his room. We are getting into a routine with the isolation now with school coming in twice a day and our wonderful Sue coming in from home a couple of times a week. William was due to have his line out today but it was postponed to tomorrow because the emergency theatre slot ran out. His new line will go in on Tuesday and he will begin the antibiotic line locks in the hope it will last more than a few weeks this time. He is still on 24 hour TPN and extra fluids so we will wait and see if things settle when the line is out, otherwise he will need his home TPN re-formulating and will end up staying in hospital a little longer. We can't wait to get home and see Hope and Ellie.

Living In A Box

To me, William seems to be doing well and getting better from his line infections. However, his platelets dropped over the weekend and his liver function tests are poor for him. All in all, his blood tests suggest he has been a bit more 'septic' i.e. the infection had more hold on him than we thought as he fights and copes so well and looks well for the numbers showing in his blood. He has to remain in isolation for the time being so we get our own cubicle but there is no school or playroom. The good news is that it could well be the sepsis that is causing him to need more fluid as it has an impact on his kidneys. The bad news is that we look set to loose his line. We are going to try these line locks, an antibiotic, antifungal and antiviral agent that will be locked in his line when he is not on TPN to kill anything that wants to set up residence there. The team think it would be better to do start fresh with a new line. So, we will soon be doing the usual, almost monthly these days, routine of the line coming out and a femural line in his groin put in for a few days before a new one is put in. This time, the team want him to go to Birmingham for his new line as there are experts there in getting lines in children like William with limited central line access. Our team also want to update the transplant team as they are not happy with the way things have been and want advice on managing William in the medium term and hope his transplant will not be too far away. I must stress as the girls read this that Wills is OK but that he is on the maximum of everything and there it not much we can do when he is unwell. His bugs are getting resistant to the antibiotics and his liver is struggling with the constant infections with numbers creaping up suggesting his liver will eventually start to fail if these infections were to continue for a lot longer. This is a key reason why we were referred for transplant and it was very much the right thing to do to choose this option. He needs his call as soon as possible. It still upsets me to think like this because of what I am wishing for someone else but he does need it. I almost play games with myself. For example, a wonderful Mum on the ward who lives nearby saw me handwashing our clothes (the washing machine here is broken) and offered before insisting she takes it home with her to wash. She took some today, including my favourite jeans. Now I am wondering if I we will get called, leaving it behind. Does being somehow not ready make it more likely to happen? It would be a very small price to pay.

I am off for my journalism course tomorrow. The writing is keeping me sane at the moment. We had a task to write a column this week. I would love a column in a family or health mag or newspaper page. I have a book on parenting a chronically sick child called 'Extreme Parenting'. This is what I would call my column and it would combine our story with our experiences of 'extreme parenting' such as giving up a good job with a big wage and living on a low income (topical at the present time), entertaining a small child on a drip 20 hours a day, coping with separation from Hope and Ellie, enjoying days out with a buggy or electric wheelchair and no car.... It would be humourous, as we have to find the funny side and would cliff hanger ending each week - will we, won't we get the call and then how is he doing each week. It would also raise awareness of transplants and organ donation. We are supposed to be having a session on how to get a column tomorrow so I hope I can work out some ideas on how to pitch it afterwards. I would read it! Here is the sample of how it could look that I am going to take in tomorrow (I bought a printer to use in hospital today. I just can't get on with the amount of time we spend here without one!). If anyone has any mag or paper that springs to mind where it would fit the style then please do let me know.

‘Extreme Parenting’ (series title)

Am I living in a box?

This week has been another week spent in our ‘Chelsea Pad’, the affectionate term we have adopted for Chelsea and Westminster Hospital. We have been coming in and out of here for three years now, unfortunately, of late, more in than out. We are usually on the same ward every time, almost always in one of two beds. It doesn’t take more than a couple of days to feel stuck in the rut that you had managed to escape from for a couple of weeks. There is a daily script that everyone sticks to, often quite literally. Wonderful people whose sole aim is to help will come in at exactly the same time every morning and utter the exact same words, every single day. Over the years this has gradually become more and more dispiriting. On Wednesday I woke up and prayed to be set free from the ‘Groundhog Day’ loop. What do they say about think hard about what you wish for? A few hours later my prayers were answered. William has a particularly nasty and potentially infectious little bug and we were swiftly trundled onto the ward next door and into a cubicle. The loop was broken but with it came a price. I am now in a box, with no outside windows, with a lively but poorly and fractious four year old tied by his drip to a pole twenty four hours a day.

I have had to draw all my resources to keep William entertained without resorting to spending copious amounts of money in the nearby Chelsea shops. One good thing our confinement is that I am unable to escape with him to the Kings Road where I would be forced by very strong persuasion and guilt to buy him a daily supply of Thomas the Tank Engine books and new engines. There is a newsagent adjacent to the hospital and I have succumbed to a few magazines in my moments of creative weakness. In my defence, these have been milked of every available second of entertainment. Once the stories have been read, colouring and activities done the pictures are cut into jigsaw puzzles, sorting games, memory games and for sticking collages.
I have to keep up my own work whilst in hospital as we may not have a home to return to, especially in the current climate of mortgage defaults and house repossessions. I have my laptop and mobile internet which doubles up in the day time as a DVD player and an endless supply of children’s TV tie in websites. I realised today that I really can’t manage another week without a printer so purchased the cheapest and smallest I could find within a thirty minute return trip while William was having a school lesson in his cubicle. We can now print the activities and templates from the websites and already have a plea in the parent’s room for discarded boxes and juice bottles so we can make a ‘Mr Maker pasta robot’. As I was setting up the printer, William investigated the box it came in and ended up climbing in. A whole hour passed while we decorated it before William sat in it his new ‘house’ to watch another DVD. Making a house is one of his ways of expressing his very strong desire to go home from hospital. Meanwhile, he is taking this ‘living in a box’ to a new extreme.

Stuck

We didn't go home yesterday. William's blood numbers are not too great. There are suggestive that he is not yet fully over his infection or may be brewing another, in fact he has spiked a bit of a temperature today and is now on another antibiotic just in case...we will know if he has a new bug tomorrow. He is also dehydrated and is back on 24 hour TPN with an extra 500 mls fluid - making over 4 litres a day! It looks like he will have to stay on at least 22 hours TPN from now on. Ideally, he needs 24 but the liver needs a break from processing it. Even going up to 22 will threaten the liver more than a shorter period on TPN. Hopefully, this will not be for too long and we will get that call. For now, Wills still has a bit of a battle ahead to get over this infection completely and get control of his fluid and electrylyte balance before we can go home.


I miss Hope and Ellie so much. So much goes on in their lives without me and we all miss out on sharing our lives. William is unwell more and more of the time and it is taking us longer and longer to get him well again each time. This is all getting so much harder to deal with but we all just need to keep strong and hang on in there. We will get that call one day. Our precious donor will not just be giving life back to William life. In so many ways they will be giving life back Hope, Ellie and I as well.

I have put some more images up on the exploration blog. I think they do a good job in reflecting how I am feeling right now.

Stories shared

My writing career is really taking off and I can not call myself a published freelance feature writer (while naturally working on a novel). I am also working on some poems to go with the images I am taking to capture our transplant journey. I was back at City Lit for my journalism course this morning and came back to find my creative photography course had arrived. It is all coming together very well indeed and I am very excited. I was really pleased to read comments on my blog from Holly saying that she also felt inspired by the 'Transplant' installation and also by my arty-farty blog to photograph her own kidney transplant, set to take place next week. It is great to think my 'work' has inspired someone, especially as I am really a beginner in this kind of photography. It just goes to show that anyone with a bit of imagination or a mad idea can be an 'artist' and have an impact on others (Paul!!! ;-) ) I can't wait to see what Holly comes up with, especially as she is already a freelance photographer. It is great that so much can now be shared over the internet, linking people who share experiences.

I am writing some pitches about organ donation among children and young people ready to send to a handful of publications tomorrow (they are drafted but I have succumbed to the horrible cold going around this place and my brain has turned to cardboard, in need ot honey, lemon and sleep before I press the send button on anything). As I am writing about transplants and organ donation, I have set up some google alerts. I was very sad to open my inbox this morning to find this story from The Birminham Mail about a little boy called Ubaid Ali died at the beginning of September while waiting for a liver and small bowel transplant. Ubaid was just 15 months old, the same age as William was when he went onto TPN. Ubaid's time on the list ran out just as we were joining it. He died on a ward just down the corridoor from the ward we stayed in during our transplant assessment. My love and prayers go out to his family tonight.

Wills is doing well. He has some fluid and electrolyte balance issues but is clinically well and over his infection so we are hoping to go home on Friday and tweak the TPN at home.

What caused this look of horror?

Of all the painful and distressing medical interventions William has to go through, what do you think was the thing that caused him to look so dismayed and run down the corridoor in an attempt to escape? A bath!!!!

It's a small miracle I'm blogging today at all...

I left William (or Wilz as he has decided to be called from now on. Wth the help of a set of magnetic letters he decided that looked pretty good!) for five minutes to pop to the loo. We then went out for a look round the bookshop. I came back, frazzled after the biggest of toddler paddies at leaving the shop before Wilz had had the chance to be read the WHOLE series of Thomas books. What was waiting us in the sink? My portable modem directly under the incessantly dripping tap! William had been 'washing it'!!! After being more than just a little cross, I pulled out the sim card and left it to dry. Later in the evening William had a set of IVs. The nurse put the tray on top of the sim card and when I went to get it to test out the modem...it had gone! What was the odds of finding it at the bottom of the clinical waste? I hadn't realised how cut off I would have felt without my internet, even for just a day or two whilst I waited for a new modem and/or card.

William and I have been a bit fragile with each other this afternoon. We have spent five days technically in a box with William attached to a pole twenty four hours a day. Wills tends to lash out when he is fed up as he can't run away. We had to have big words about punching and saying 'go away, I don't like you'. He went to sleep this evening contemplating what would happen if I did go before a little voice squeaked "Please don't go Mummy" This was followed by very long cuddles. He is one tired and fed up little boy. Thankfully, we were told today he is no longer in isolation and the pair of us were like a stretched elastic band that was just let off! We are still in our cubicle as there are no double bay beds to put us and Wills can't go out on the main bays. So, for now, best of both worlds for us. We have our own space but he can go to school. Even better news is that we should be home at the end of this week or beginning of next - as long as William stays well and maintains fluid balance on his normal TPN regime. Fingers crossed!!!

Thanks for all the comments on Saturday's blog. Social interaction in this kind of environment is a fascinating subject and one I will revisit.

A Fine Line

William's bug is responding really well to the antibiotics and I would have been hoping to go home some time next week. Things are never that straight forward with William these days. His fluid balance has gone a bit off and he is currently on his TPN 24 hours a day and extra fluid overnight. We are really hoping things settle down over the next few days as we will not be allowed home until he is stable on something like his current home regime. We are VERY lucky as we have learned that William is growing a bug called enterobacter sakazakii. This is a very nasty little bug. We found it early and he responded to the treatment. We do think it has been living in his gut for some time though where it would have done a lot of damage. If so, this could explain why his condition has deteriorated so quickly over the last few months. I am a bit of a detective and keep questioning the docs about it all. Of course, no-one knows and no-one would like to commit to a strong opinion but they all agree that it is a viscious circle. Bugs like this attack the gut, the symptoms get worse, more bugs colonise the gut and attack it...to the point that the cells that are there to protect the rest of the body from this bug ecosystem are not destroyed, providing a route out for any little blighters who fancy taking a stroll around the rest of William's body. When they find his line they think all their Christmasses have come at once - there is a nice wall to cling to, plenty of food and no immune system to attack them once the TPN has been stopped and the line is clamped. There they breed, ready to be pushed back in greater numbers when the line is used again. Our team are researching 'line locks' - an antibacterial solution that can be put into the line while it is not being used to make it a lot more hostile to potential inhabitants. Of course, we need to get back to something less that 24 hour TPN again before this becomes relevant.

As William has this nasty little bug, we are in strict isolation. There were no cubicles on our usual ward so we are next door. At first, I was very unhappy about this. Here, I am going to get a bit controversial and I would be really interested to hear if anyone else has had similar experiences in hospital and, indeed, if and how things are different among other groups of patients in other hospitals. When we first arrived as a 'gastro family' in our hospital we entered a very strange world of parents and children who lived for months, even years, in hospital or in and out of hospital. At that time, this was a very supportive set of people. We were like a family. Readers that have been with me from the start will know all about the beautiful Riley and his wonderful parents, Helen and Adam. We shared a double bay and we were like flat mates. Riley died and we were all devestated. He was one of six gastro children who passed away that year and everyone was looking out for each other. We were worried for each other when the children were sick and happy for each other when things went well. Things are very different now. There are a lot of families who have been around for a very long time living in an institution. There is a kind of hierarchy now - almost a 'top dog'. This is a bit fluid and can alter a bit depending on who is in. We are not so supportive of each other and there is almost an element of 'competitive parent syndrome' going on among some of the parents. If we were in school, certain children would be the best. Here, they are the sickest. Perhaps because the sickest child is the best patient and that is the most important measure in this strange and un-natural community we are in. It is only too easy to get sucked in and join in. I have never liked this but now I feel even less a part of it all. I was feeling a bit alienated but my precious week of 'normality' when all my children were at school and I could come home and work, clean the house and get a hair cut has woken me up again to what life should be about. I am so glad I went to the first session of my journalism course rather than staying here on Wednesday as that was a turning point - I chose keeping my grip on the real world over getting pulled back into the things that matter in this world. At first, when we were moved to a new ward where William know no-one at a time when he was feeling unwell and I was worried about him did upset me. I felt that it reflected our standing in this wierd hierarchy. However, we settled here quickly and I am now enjoying the break from 'parent politics'. It is a lot easier to keep my head down and get some work done in the evenings and I have found myself much less frustrated by things. That is not to say that I don't like it on our usual ward, far from it. That is our second home and I miss the staff. They are only next door though and I have still been able to chat things over with those who know Wills the best. It is nice to meet new people too. When we first got here, I was begging them to find a way to get us back to our usual ward. Now, I am easy either way. There are good and bad things about both. I have reflected and learned a lot from the break from the norm and am armed with new strategies to enable me to keep being the me I am at home and not to become institutionalised. I think a lot of this has to do with the optimism I am feeling that we will get the transplant eventually and be out of this world as it exists at the present time for good.

I wonder it anyone has made any sense of any of that. I have been vague as it is all about an overview and perceptions than anything specific. I know my blog is read by other parents of children who spend time in hospital and by adults and young people who have spent a lot of time in hospital themselves. Does any of this ring any bells? What kind of communities have you experienced? How does our behaviour change when we become institutionalised? On a wider level, I wonder what has made things so different now than they were when we were here with folk like Riley. Have the situations changed, is it just as simple as personalities, have we as humans changed over the last three years or is it just me and my perceptions??

Being isolated and being set free.

William has been much better today, although he needed several fluid boluses (fluids pumped in quickly in resonse to dehydration shown in blood tests) and is currently having a blood transfusion as his red cell count has dropped. He has a funny bug in his line that set the infection control team into a bit of a spin so he is now in isolation. The good thing is peace and quiet for me but the bad thing is that Wills can't go to school. He should be out of isolation soon as his temperature is responding to his antibiotics really quickly this time. I hope we will be re-activated on the transplant list at the end of the week or beginning of next.

I was due to begin a journalism course at London City Lit today. William's fantastic school health care assistant came in so I was able to go. The nurses were really impressed that I left Wills and set out to do things I wanted to do, in my nice sleek hair (yep, it is still sleek and I am roud of my straightening skills!) and dressed as best I could in the circumstances. I was so glad I made the effot. I do writing courses by distance learning but I so yearn to get out and meet people. Being Mum to a child like Wills is very isolating. I was really pleased when the tutor announced that all her groups tend to stay in touch after the course and support each other in establishing their careers. That was exactly what I was wanting out of this. I learned some useful nuggets of advice in this first session. I hope I can get to enough to bond with the other students. It only took 30 minutes from our Chelsea Pad so there is no reason why I can't continue while we are there. Birmingham is a different issue. Maybe it is good to start things that I hope to finish before we get the call. Maybe the call is more likely to happen that way. City Lit is an amazing place. The whole college is dedicated to adult learning and it was full of vibrance and creativity. I passed rooms of people playing instruments, painting, singing 'Killing Me Softly' as well as writing. The whole place was full of energy with people keen to learn new skills for leisure, self-discovery or career change. I will really look forward to Wednesdays. Most of the courses are one two hour session a week and a term long. I fully intend to have one on the go each term and am already selecting the next.

I am experimenting with photography to capture this hospital admission in an 'artistic' way (if you call this kind of thing art) or 'reportage', 'documentary' or just weird and slightly crazy pictures...anyway, some are about to go up on my arty-farty blog. I will then do some very exctiting things such as registering student membership of the National Union of Journalists (NUJ), giving me a pass to access 'press only' areas and functions. How cool is that? Maybe I will be able to take pictures in the Tate with that? I was stopped the other day and I was just taking shadows of people in a white room with big red canvasses all around them. Not fair really, painters and drawers can work in there and record whatever they like but not photographers. From now on, I am a student photographer and journalist and am going to start behaving as such!