Friday 3rd September 2004 ( Day 8 )

No jumping out of bed ready for the playroom this morning. He has not really completely woken all morning and most of the afternoon, just sitting up to be sick every few hours. Some of the time he just looks around but mostly he sleeps.

My Mum and Dad came in to give me a break during the afternoon. Kirsten, Joan, David and Tom drove down south to go to Sally's wedding but visited on the way. Tom looks so much like a bundle of energy compared to little Alex who just wants to sleep.

Alex is still being sick and dribbling loads, maybe even more dribble than sick. The nurses are sure that what his is throwing up is dribble so have fitted a bile-bag to his feed tube. This should allow his tun to empty of the stuff he's throwing up. He's not having any food or water to in theory the tum would be empty. Fluids are being replaced by intravenous drip.

My Mum looked after Alex overnight and I slept in Eckersley. Alex was still poorly overnight with diarrhea and vomiting. Poor Mum was thrown in at the deep end with one of his worst nights.

Saturday 4th September 2004 ( Day 9 )

Overnight Alex was so unsettled he has been put onto morphine. The dose has been increased this morning because he was not happy. There is a balance between unconscious and pain relief that has to be reached with the morphine level.

Alex's haemoglobin level has dropped again to 6.2 so he's had a blood transfusion. The blood cultures grew several bugs that would have initiated in his tum. This means that he will be in till Saturday. They increase the antibiotics protocol from 5 days to 7 when things are grown in culture. Nurse Neil explained that since he is neutropenic, instead of the stomach lining protecting the blood from bugs, it's letting them through. Nothing much we could do about it, especially since he's swallowing loads of dribble.

Kirsten is happy to be at her cousins wedding but not happy to be so far away from Alex. If sure Joan, David and Andrew and the same mixed feelings. Kirsten keeps ringing on the very expensive Patient Line phone. Alex being at his lowest for weeks cannot help.

At lunch he lay for a while smiling at my Dad and pressing buttons on a few toys. During the afternoon Alex still did not have the energy to sit-up, even with the blood transfusion. Early evening he did smile a little but we had to work hard for it.

Watching the concoction of drugs injected and dripped into the tiny figure, it's surprising that there's any room for blood at all.

Sunday 5th September 2004 ( Day 10 )

Alex never really went into a deep sleep all night. Every breath was laboured and each exhale was a grunt. Around midnight, I had to ask for a doctor because Alex was crunched up in a ball with white knuckles and curled toes, obviously in pain. He was not quite screaming but the loud "errrr..." with every exhale made his feeling clear. The doctor sent for the registrar who was a little worried that he may have a blockage in his digestive system that would be the cause of the pain. We had an x-ray at 1am, a portable machine was brought to his bed as I was out calling Kirsten to say what had happened so far. The x-ray showed no obvious problems. By this time, to keep him still the nurses had trebled his morphine dose.

Over the next few hours, Alex was so restless that he rubbed the sticky holding his feed tube in place. It finally stuck more to his pillow than his face at 6. We left him a while to calm down before moving him to the recovery room (first time out of the bay in three days) and putting in a new tube. When-ever a new tune is needed it seems to be Nurse Rachel that is looking after us and it's definitely her least favourite job. First try he was sick and the tube doubled back so it was going in and out of the same nostril. Second go and he was sick three times. There was a little blood in the vomit but I'm told this is probably from a combination of a new tube, very low platelets and lots of vomiting.

After the trauma of a new tube and being so sick, I put him back into bed and he slept the best sleep in days.

Dad and I went for a walk in Raoundhay Park and ended up watching the cricket and eating ice-creams. By the time we arrived back Alex had been x-rayed yet again to see if there is any infection in his chest. There are shadows on the x-ray that most likely are infections. That means he has infection in his lungs, tum and gut, plus nappy rash. No wander he's not very happy.

Kirsten, Joan, David and Tom drove straight to see Alex from Sally's wedding. Kirsten and I made plans for Alex's care for the next week. Just after that Kirsten was vomiting, Joan and David took her home to recover from what is most probably a dodgy prawn sandwich. So much for plans, Kirsten was going to be on duty over night.

Alex vomited up his new feed tube so has to have a new one. It is necessary to have a line to drain his tum of bile and stop some of the vomiting. Unfortunately his platelet count is very low (27 at last test - when not poorly it should be about 400) so he cannot have a new tube without another blood (platelet) transfusion. When the platelets arrived from Seacroft Hospital at about 21:30, Nurse Mark gave them to him immediately via the drip and inserted a new feed tube.

He temperature is high, between 38C and 39C so he's had more paracetamol to bring it down. The morphine has also been increased again and a bolus button added so the nurses can add an extra burst if he seems in pain. They have given him an extra burst of morphine three times this afternoon.

Monday 6th September 2004 ( Day 11 )

Alex is no better today. Doctor Tim, Doctor Jo and the consultant from the Intensive Care Unit came to see him. They are worried about the temperature that has not dropped after three days of antibiotics. They are changing one of the antibiotics to another that will target a bug that has been grown from his blood samples. Alex may have to go back into ICU for close monitoring - he needs more fluids but that would mean a higher chance of more fluid in his lungs.

Two more x-rays have been taken to show how the infections are affecting the tum and lungs. When anyone touches or tries a major operation like changing a nappy, he screams until (more) red in the face and his heart rate monitor bleeps warnings that the rate is over 170 beats per minute.

My Mum and Dad came in early to take over from me but since he may be going over to PICU, I would like to stay with him for a while until we know.

Poor old Andrew is down South at work, it sounds like he would really rather be up here to support Alex and us. Joan and David came to visit in the afternoon. It is torture for all of us at the moment because Alex does not want to be cuddled or even touched.

Kirsten managed to stay at work until early afternoon. With Alex so poorly she could not bare to stay away and so collected Tom and raced in.

When Joan and David were due to take Tom home, I had to take him out to their car. He wanted to stay in "The House Outside" meaning Eckersley House but later that evening I was due to go home as well. I did not want him knowing that I was going home or he would want to come and I would not get any work done.

Kirsten and I settled down for the evening to watch a DVD but it was stopped every few minutes for Nurse Ben to check on him or replace his medication. We had been moved to a side room, which will be good for Alex and Kirsten. Much quieter than a bay. Alex was fitted with a few extra pumps (five now in all) feeding him with antibiotics, nutrients, fluids and other medications. Another reason for stopping the film was Alex threw-up his feeding tube again. The tube is still needed to aspirate his tum, hopefully removing all the bile produced in response to the infections.

Nurse Mark, who is leaving for Australia on Thursday, started his shift and the first thing he had to do was fit Alex with a new feeding tube.

Eventually, after things had gone quiet and the film had finished, I crept out of the room, leaving Kirsten holding Alex's hand.

Tuesday 7th September 2004 ( Day 12 )

Kirsten and Alex had a rotten night again. Alex was sick quite a few times and twice had to have his feed line replaced.

During the day Joan and David visited her. It sounded like Alex was very uncomfortable and they had to increase his morphine again.

Wednesday 8th September 2004 ( Day 13 )

The night was better. Alex was aspirated every two hour to remove as much of the contents of his tum as possible so he would feel less sick.

During the day he mostly slept and cried when he was uncomfortable

I arrived back on the ward at 22:00. Kirsten looked like she had not slept in a week but Alex was snoring away. His lips are very dry and have hair trapped in the skin. I pulled out the longer hairs that must have been down the back of his throat but the ends were stuck to his lips. All that could be done was to cut the hairs short. Vaseline has been used to soothe his lips. His mouth looks very dry as well but he will not let me drip water inside, he just turns away.

Thursday 9th September 2004 ( Day 14 )

During the night Alex's heart rate went up to 185 beats per minute for no apparent reason. Nurse Karen gave him extra morphine to calm him down and paracetamol to lower the temperature. Another point he was obviously in pain, arching his back and crying. More morphine settled him down. I'm told that during the day he usually has eleven extra morphine boosts so a few during the night is not much to worry about.

He's also received two transfusions full blood, to bring his red blood count up, and platelets.

Alex surprised us all by sitting up and playing with his toys. He even laughed a little when Dad and I played peek-a-boo with him. It quickly tired him out and fell back to sleep.

Later in the morning the nurse noticed that his left hand and arm were very cold where the rest of his was warm. The doctor then the registrar came to see him. Alex was given a quick infusion of fluids to try to kick start his circulation.

A consultant from PICU (Paediatric Intensive Care Unit) came to inform us that Alex can only receive so many of these fluid infusions/boluses before his lungs and heart begin to be affected. If he continues to be cold around the edges with a high core temperature, he will have to be moved to PICU for better monitoring.

During the evening, Joan, David, Andrew and Kirsten travelled over to see him. They were all due to take Tom on holiday early the next morning so had come to say goodbye. Alex was not looked as good as he did in the morning and Adam, a consultant, came to tell us he may have to go into PICU shortly since he is really poorly. Half-an-hour or so followed of debating cancellation of the holiday, I don't think they really wanted to leave Alex but also did not want to let Tom down - he's really looking forward to flying. Adam came back in and ended the debate when he said that he would not go on holiday with a child so ill.

Alex was moved over to PICU shortly before 21:00. He still does not want anyone to touch him and is obviously in pain so the trip down the corridor and move to another bed was a bit unsettling.

The PICU team's plans included re-balancing his fluids, lowering his heart rate (on entry to PICU was 175 bpm) and helping the blood circulation.

Alex was quickly moved from Ward 10 infusion pumps to PICU pumps and a few more lines were added. Even with 6 tubes going into him, there was not enough access so SHO Amanda tried to fit a cannula into veins in his ankle or wrist. Unfortunately he still too chubby to easily allow a vein to be found. A vascular catheter was fitted a few minutes before midnight into his right hip. This is more permanent that a cannula and stitched in instead of taped, hopefully making it more comfortable and less likely to be pulled out. Kirsten and I then went to bed.