Tuesday 12th October 2004 (Day 14)

Alex, full of morphine, slept until 9. I did the same. We were hoping that he would be able to go over to Joan and Davids for lunch and most of the afternoon but since his temperature has been unstable, we were advised not to go.

Instead we (including my Mum and Dad) went over to the Thackeray Museum for lunch. After ordering the food, I noticed that Alex was looking a big too red so whipping out the requisite thermometer his temperature measured 38.5C. Mum took Alex back to the ward for morphine and paracetamol and Dad and I stayed to eat.

After a long sleep for most of the afternoon, we took Alex over to Eckersley House for a change of scenery.

He ate a very good tea considering the milky feed he has most of the day and night. He painted a nice face for Tom. It could also have been a house or a tree, whatever it was very nice. After that masterpiece, he wanted to paint my face. Just after I had a shower.

My Mum and Dad left about 19:00 and I kept Alex awake a bit longer than he wanted to because David, Kirsten and Tom were on their way in. Tom arrived and joined the weekly Jolly's Trolley delivering sweets to the ward. Alex gained a bit more energy and played for a while. They did not stay long but Tom wanted to stay with his beloved sweet trolley. Two minutes after they had gone, Alex was in a deep sleep.

Wednesday 13th October 2004 (Day 15)

Alex woke at 6. Quite happy but cried when I took his loudest toys away so he did not wake the rest of the ward. We were in the playroom by 5 past.

The doctors, surgeons and consultant are worried about his line site, it's a little more red than yesterday. There's not much that can be done about the lump on his bum until his blood counts come up. Just about everyone in the hospital has been to see his line and bum, a steady stream of medical staff.

Alex's temperature has been down to normal all day but there has been a bug grown by the microbiologist from the skin around the line site. If it gets transfered to the blood, his temperature will go up and more/other antibiotics will be given.

The blood counts of white and red blood, clotting factors and so on are all as low or lower than when he was in-and-out of intensive care during the last cycle. People keep commenting how well he looks and how remarkable is it to see him with so much energy. We still cannot take him too far from the hospital and even trips to the cafe are punctuated with taking his temperature.

My Mum and Dad stood on duty while Kirsten and went to the cinema again. While Mum was bathing Alex, he pulled his NG tube out again. Another was fitted even though his platelet count is low. We have to watch out for nose bleeds because of this. He was is a contented deep sleep when we arrived back.

Thursday 14th October 2004 (Day 16)

We can see that different experiences of the medical staff make huge differences... the general surgeon wanted to take the Hickman line out right away but the consultant said it would be dangerous with the white/red/platelet cell counts being so low and we should wait to see what a change in antibiotics will do.

It becoming difficult for my Mum and Dad too. They have been over in the UK for months now, burning through money while someone else manages the building of their new house in Spain. It would be nice to see Alex's blood counts come up a little and it would give them confidence that we are not being abandoned. I would like them to stay, not just because it's really nice to have my Ma and Pa here but because they have given me breaks from Alex when Kirsten is away and Joan and David are busy with our dogs and Tom. On the other hand, I can see that they need to get back to their project in Spain and four months is a long time too keep them trapped in the UK. It will be nice to see them over in Spain when the house is finished.

Alex's line is looking even more red and sore, it's really bothering him now. He scratches at the clear patch covering the area and screams if pressure is put on the area, especially when he's picked up. Any small pull on his drip line and he makes sounds like the baby t-rex in Jurassic Park. I always said he is a monster!

Alex wants to walk everywhere. We had to follow Joan and David out to the car-park, all the way from the ward, down the lift and out onto the pavement. When we arrived back on the ward the consultant was very surprised to find him so full of energy. All the blood observations say he is very ill. The consultant confirmed that Alex has a infection in his blood, the same bug that is on his skin around the Hickman line. The red and white blood counts are really low so the we will wait another day to see if the antibiotics can save his line.

The Hickman line is necessary to take blood samples and give medicines while he is very poorly. It should stay in for around six months so blood can be taken to check he's still in remission. The surgeon explained that they do not want to take it out if it can be helped because it would be difficult to put another one in, both sides of Alex had now been used (another line fell out months ago). It would be a few days until something else more permanent could be fitted in case the new line was seeded by the current infection. Until then a temporary cannula could be fitted. We really want to save the line.

His temperature stayed down most of the day but ominously crept up to 37.3C during the evening. Still looking quite well.

Friday 15th October 2004 (Day 17)

Temperature went right up during the night and the line site looks really red and angry now. The consultant confirmed that the Hickman line will be removed this afternoon.

My Mum and Dad drove in to hospital via Joan and Davids today. They said goodbye to Tom in Ilkley. We popped over to the Thackeray cafe for hurried lunch since Ma and Pa need to drive down to the Chunnel by 19:00 and Alex needs to be back on the ward in case the surgeons are free to take his line out.

I would like to say thank you to Ma and Pa for coming over and trying to keep me sane. It's a long drive from Spain and a lot of effort has been spent making sure we have loads of support. I know Tom, Alex and the rest of the clan left in the UK will miss your company nearly as much as I do.

Alex was nil-by-mouth from mid-morning until he went down to the theatre just before 18:00. He'd had a platelet transfusion early afternoon and was currently receiving a full blood transfusion, which would continue after the operation. The platelets were definitely required to stem any bleeding that would occur as the Hickman line was removed. His red blood cell count was very low so the full blood was used to boost that. Usually Alex has no energy when his red blood is low but during the morning he was quite alert and energetic, if a little moody.

After the operation we were called to collect him and we could hear crying from a long way down the corridor. Alex had woken surrounded by strangers and was showing he disapproval. It was back on the ward, after a ten minute ride on a transfer bed before he calmed down.

Part of the distress must have been caused by the cannula's (temporary tubes going into veins) in both feed. He will not be walking for a couple of days until the cannula's are not needed any more. Just when he's toddling everywhere.

The surgeon said that quite a bit of flesh had to be removed with the line because of the deep infection. More antibiotics, and therefore the cannula's, would been needed for a further two days, at least.

Saturday 16th October 2004 (Day 18)

It's quite difficult to entertain a lively little monster when he's not supposed to walk or crawl. The surgeon came to check that everything was going OK and confirmed that he would be continuing the antibiotics.

I was hoping to take Tom swimming in the morning but I needed to hear what the surgeon had to say. Joan brought Tom over by train at lunchtime, which he thoroughly enjoyed.

I left a very tired Kirsten to look after Alex and took Joan and Tom home. Tom was really excited to stay at home. Hopefully it will be permanent soon.

Sunday 17th October 2004 (Day 19)

I spent the morning trying to make our home as tidy and comfortable as possible for the tired Kirsten to come home - fitted new lights, changed the bed, vacuumed, did the washing and washing-up and put out a mug with a teabag. After all that I raced Tom back into hospital. Kirsten stayed for a while but raced off after an hour or so to get some rest, leaving me with Tom and Alex. Alex wanted to sleep and Tom wanted to be in the playroom, typical.

David and Andrew came in to see Alex and retrieve Tom. Putting Tom into the car was easy enough but he looked forlorn when I kissed him goodbye.

I later rang Kirsten who had taken down the light that I had put up and was having to tidy the whole house. Don't I feel like a bad husband. I receive complements on being a good dad quite often (good for the ego) but I've never been told I'm a good husband (bad for the ego). Does anyone know of a good book to explain how? Answers on a postcard please.

I'm not surprised Kirsten is tired because Alex is really difficult to amuse when he's not allowed to walk or crawl. He's been in a pushchair round the whole hospital site - twice, up and down the corridor what feels like 200 times and spent hours and hours in the playroom. Mostly he plays with the toys around him but quite often it something across the room that makes him want to walk.

One of the cannula's came out this morning because it was not working. The other needs to stay in a day or so more so the antibiotics can be finished. Saying that, his dressing was changed this afternoon and the area that is/was infected looks really bad. There's a hole about one cm in diameter filled with dry blood and the skin around is really red and sore looking. Morphine is still being administered to help with the sore area but it should have cleared up by now. The Charge Nurse thinks he will have to have a couple more days of antibiotics meaning that we have to be even more careful with the cannula in his right foot.

It's 21:34 and Alex is still fighting sleep. Drugs are needed - some for me, some for Alex.

Monday 18th October 2004 (Day 20)

The pillows deflate. Really, they do. The NHS pillows are plastic and waterproof. When you put weight on a pillow, there's a hole somewhere that slowly lets the air out. Some NHS magic allows the pillows to self-inflate once the weight is off. So finding a comfortable position requires planning ahead... one pillow is too thin when deflated and two are too thick when inflated. Put two pillows together and place head on top. The head is now at an awkward angle but after 15 seconds or so the pillows have deflated and comfort is achieved.

Now Alex, being a clever sod (gets it from my Gramps) has figured out that once settled (after nappy change or other night time disturbance) will wait till the deflation of the pillows has finished before crying again. This is no joke and I'm not exaggerating, much. He will wait till I am comfy then throw a dummy, bottle or fit.

Last night Alex needed a change at 3. Once changed he appeared asleep again so back to bed I went. After four deflation's, I gave up and took him out of the bay to allow the other kids some rest. An hour later he was back in bed again. He was nice to me in the morning and did not wake again until 8.

The last cannula in his ankle was leaking both blood and antibiotics so it had to come out. Unfortunately Alex was very sleepy at the time and did not want to enjoy the freedom. Just as he woke again, at about 11, the doctor came to fit the new cannula. It took one nurse, one dad, two doctors and six tries to find a vein. His arms now look very bruised and he was nearly sick from screaming. It's at points like that when I really look forward to this being all over.