Tuesday 19th October 2004 (Day 21)

Alex woke just after midnight and was really unsettled so I quickly took him out of the bay. I told the nurses that I did not want to disturb Leah and the other kids just to be told that Leah and her dad, Andy, were down in the cafe having chips. Alex and I spent the next hour with Andy, Leah and the cafe night staff, who gave us all free drink and food!

We had a nice sleep until 5 then back into the playroom for an hour. Alex then slept until 10. Lovely.

The cannula in his arm lasted all day. He ate well during the day. The blood counts still right down. Alex was really glad to be back on his toes again after a weekend of needles in both feet. It's really nice to see that everyone is cheered by Alex stamping up and down the ward with a big grin on his face. A new trick of his is to blow at the cartoons hanging from the ceiling in the playroom and corridor, a really cute baby blow with a big pout. It's infections and soon has most people around him pouting and blowing in different directions. If I capture it on film, we could make a packet on You've Been Framed.

Alex was not at all sleepy until 23:30, even then I had to have him on my lap for a while. Every time I put him in the cot, he pulled at the cannula, he now knows that this gets attention fast. I don't want him to have to have another. Antibiotics, transfusions and blood tests will be required for a few days yet.

Wednesday 20th October 2004 (Day 22)

Alex woke and started throwing things at me before 5. The little git was smiling.

During the night he had the antibiotic vancromycin, which needed to go through the pump at quite a high rate. Unfortunately the pressure caused the cannula in his arm to leak and eventually stop working. The cannula had to be removed.

It was a while before a doctor was free to put another cannula in so we went to the playroom. During the last few days Alex has developed a nasty habit of head-butting things when frustrated. He does this without holding back and there are quite a few bruises now. If he's in the pram, the side bars are the target, when carried, it's my head that receives the brunt of the attack but when crawling or walking, he will crack his head on anything. It's difficult to stop the first one. I remember Tom doing something similar and I hope the habit is as short lived as Toms.

Doctor Tim tried for about half and hour to find a good vein for a new cannula but the layer of baby fat on Alex makes it very difficult. Alex had a hot bath to dilate the veins and then back in the treatment room for another go. The only available vein was in the bottom of his ankle, the end of the tube pointing down past the arch of his foot. The bottom of his foot had to be padded like a platform shoe to make sure that the cannula lasted more than a few seconds. While the needle was inserted, Alex screamed like he always does in these situations (understandably) by then suddenly fell asleep in my arms. Worrying but it made the job slightly easier. He slept for over an hour.

Cormac, Belinda, Jacob, Kirsten and Tom came for lunch. Kirsten stayed with the sleeping Alex while the rest of us went for lunch in the Thackray museum.

During the day, Alex had a few spontaneous nose bleeds indicating probable low platelets. The new cannula was not releasing any blood so Alex had a heel stab. The bloods did show low platelets but not low enough for a transfusion.

The vancromycin antibiotic has been stopped because the cannula will not take the flow and he should not need the general cover since the meripenin fights the infection from the Hickman line.

After everyone had gone I tried to tire Alex out but it's difficult when he can't walk on the cannula in his foot. At 21:00 I needed a little break so I put Alex in his cot with toys, dummies, juice, biscuits and books. I was determined to have an hour to myself, Alex could scream, cry throw things but this hour was mine. There were no nurses available to look after him so I had to sit by the cot. After about 15 minutes, Alex had thrown everything out of the cote, including his deflating pillow and blanket. Once left with an empty cot, he stood up and started head-butting the metal side very hard. By the time I had put the side down Alex had four big bruises and as the side was lowered he hit the bridge of his nose. Only a little blood but a nasty red bump. So off we went, back to the playroom where we played until 23:00.

Thursday 21th October 2004 (Day 23)

During the night, the pump was occluded dozens of times, which meant that the cannula was now working properly. It needed to work until he could go for a more permanent replacement. The doctors were reluctant to put a permanent line in because it was be seeded by the infection that plagued the Hickman line and it would need a general anaesthetic in theatre to fit. Most kids would stick to the cannula's in this situation because there's only a few days of antibiotics to go. Antibiotics are due to finish on Monday.

At 8 Alex woke. The cannula was still working for antibiotics in by no blood out so the doctors prescribed a platelet transfusion to lessen the risk during the operation to fit the long line. Half way through the transfusion the cannula started to leak then failed all together.

Alex's NG feed had stopped at 3, ready for nil-by-mouth 6 hours before the operation. His bed looked like a murder scene - his pillow had blood from his nose bleeds, the NG tube had also leaked, emptying the contents of his tum onto the rest of the bed. Lovely.

Alex went to sleep at about 13:00, I sat down, opened by book and the doctor came in to say Alex would be going down the theatre soon. Sods law prevails.

It was in fact about 30 minutes before they were ready, during which time Joan and David arrived. David went to Thackray to grab a take-away for us all. Joan and I took Alex down to theatre while he was gone. Alex was given gas to make him sleep and we were told that it would be about half an hour.

After an hour, David and Joan needed to get back for Tom and the dogs. Five minutes after they left Kirsten arrived. After two hours we were a little worried and had to ask Doctor Tim to check with theatre. They were having problems finding a vein to fit the line and it was taking much longer than expected. A little later we were called to collect him.

We took Alex down to the cafe for tea, just before he was due antibiotics at 18:00. Alex was in grand form, marching all over the cafe, still a little drunk from the general anaesthetic. He is now known by name by so many people around the hospital, including the cafe staff and loads of patients. It's funny how many time "Hello Alex" is called just in a quick trip to the cafe.

Just after that, I abandoned Kirsten and Alex to head home for a long sleep.

Friday 22nd October 2004 (Day 24)

Kirsten managed to get him to sleep at 21:00ish and he slept well until 9. The new line is working well and there seems to be now after effects.

I stopped in after visiting work. Alex was asleep but we received his blood counts, after a big increase on Wednesday I was hoping for another big leap today but it's gone down again. So much so that Alex may need more transfusions soon.

Alex has been neutropenic for three weeks now. The longest yet, even longer than the last cycle where he was in and out of PICU. We were told that the side effects would last longer each cycle but it has to be time to recover now. Hasn't it?

Kirsten told me that she and another Mum, Jenny, were chatting while Alex and Jenny's 6 year old, Lewis were playing in the bay next to the beds. Lewis ran off to the playroom followed a few moments later by Alex. Kirsten and Jenny looked out of the bay to see Alex toddling after Lewis calling loudly. Alex stopped at the treatment room, (the one he hates because of all the hours of needles in there) and started clapping. A new toy has been installed in that room, a spider that drops from the ceiling on someone clapping then slowly climbs back up. Alex was clapping as loudly as he can, which was not loud enough, to make to spider drop. For a while, that room was just a room like any other.

During the night Alex had pulled out his NG tube. The nurses put another in during the evening but it did not work. So did a second. So they left it out, planning to try again in the morning.

Saturday 23rd October 2004 (Day 25)

I called Kirsten at 9 to find how Alex had been. There had been a new arrival in the wee hours and the nurses had to turn all the lights on and change the bed. Alex slept through it but Kirsten was woken. It took a few hours to go quite again, just before Alex woke, bright and breezy. Poor Kirsten.

Tom and I came in for lunch. We are now regulars at the cafe in the Thackray Museum. The manageress even knows us all by name. Alex was in very good spirits, he ran around the cafe and shop as if he owned it.

He looked odd without his NG tube. It's been months since he's not had one for so long. Just a bald baby with a bandage on his arm. Part of his poorly identity has been taken. He went without his overnight feed but he's been drinking the special milk drink from a bottle.

A new NG tube was fitted later in the day.

Sunday 24th October 2004 (Day 26)

I brought Tom in for lunch at Thackray again. We also took a very quick trip around the museum. Quick because we did not want to spend a long time outside of the ward in case Alex was due any medicines. His temperature was a little on the high side so we needed to closely monitor him.

When we had eaten and arrived back in the ward, Alex fell deep asleep. Kirsten went home for some well earned rest. Tom and me in the playroom and Alex who should have stayed asleep until Joan and David arrived. Unfortunately Alex was awake 20 minutes after Kirsten left and Tom started to get tired and ratty. Four hours of trashing the playroom with other kids and I was ready for a rest. Luckily Joan and David came to the rescue. Tom really did not want to leave but Alex and I walked him down to the car and he was asleep before they left the car park. Alex was really happy and lively until about 20:00 when he just dropped. No dummies needed just another deep sleep.

Monday 25th October 2004 (Day 27)

Thirteen and a half hours sleep. Alex hardly stirred the whole night. At 09:30 the doctor came to wake him, even shining a light in his eyes to make sure he was OK after such a deep sleep.

We were hoping to go home today but his temperature was still up in the morning and the wound from the Hickman line still looks icky. The blood results came back around lunchtime with the first good leap in the white cell count. After three weeks this bit could be ending.