What a couple of days!

Apologies for not posting yesterday but the last couple of days have been hectic.

Yesterday started with him waking up a little more responsive. It was World Down Syndrome Day and Lyall was well enough to sit in his pram and wear his lovely Sunshine and smiles(Leeds Down syndrome network) T shirt made for him by his friends Aiyana and Thalia. He had lots and lots of visitors from all around the hospital who were so delighted that the operation had been a success. Everyone was given a Sunshine and Smiles sticker so they could spread World Down syndrome Day awareness across the hospital. It was incredibly emotional seeing people who had known him since he was so tiny and played such a part in his life. Our thanks goes out to everyone but especially Sarah Cozens manager of the long term ventilation Team. We met her shortly after we were told Lyall would need Long Term ventilation and that day a light appeared flickering faintly at the end of our tunnel. We would never have got through the past 4 years without her and her team and we really hope that in some way we can help other families starting out along this road.

Lyall was delighted when Dan called in for a quick visit on his way home from college and we were pleased too. Dan struggles when Lyall is in hospital and gets very scared for him. They had some cuddles and Dan read him some books. Then we opened a message from his friends at playgroup which was a beautiful video of them all singing a song to Lyall whilst dressed up for World Down Syndrome Day. He loved it and we shed some more tears.

As Lyall was doing so well a decision was taken to take him off IV sedation and transfer him to the respiratory ward. This was great news as it meant we would be able to take turns staying overnight with him, visiting would be less restricted and it would move us nearer to going home. As Lyall has been sedated for over a week on high levels of morphine, midazolam and chloral a clear weaning plan needed to be done so he wouldn't experience withdrawal symptoms. The pharmacist wrote this up and after tears and goodbyes with the wonderful staff on PICU we moved to the ward. We'd never been on this ward before and immediately felt at home as the doctor said "we may not know him but he knew us from the TV" when we had done some interviews as part of the Save our Surgery campaign. The staff were really friendly, the ward very calm and the cubicles well kitted out and spacious.

We soon settled in and Sharron nipped home to get Max so he could see Lyall prior to me and him going to see Miranda at the Leeds arena-a birthday present planned well before we know what other exciting things would be happening this week! We got takeaway pizzas but at this point Lyall started to display severe withdrawal symptoms. The ward didn't have one of the drugs Lyall needed and there was a massive delay in pharmacy sending it over. Due to the gap Lyall was effectively going "cold turkey." Me and Max had to go which was so hard to do as Lyall was getting really agitated. By the time of the interval things had got really bad so after dropping Max home at the end of the show I went back.

Lyall had been cowering at the end of his cot, refusing to let anyone touch him, sweating, hallucinating and screaming. A doctor had decided to reintroduce the drug chloral and slow down the speed of weaning. He'd had one dose which had meant he slept for 20mins but then woke up just as upset. Another dose was given at 1am. An exhausted Sharron went home and I stood by his bed for 4 hours just patting him. He eventually slept for about 2 hours then woke again at 6. He was less agitated but clearly exhausted. It was like his body was refusing to wind down and awful to see.

Around 9 am his constipation which had been dreadful all week decided to clear and there were some very messy experiences and I had to race into town for new pyjamas. His surgeon came to review him and was pleased that despite being so upset Lyall had coped reasonably well with his breathing barely needing any oxygen. He couldn't offer any advice on sedation weaning as it isn't his area of expertise but appreciated how hard it had been for us and Lyall. Later a doctor came who is now working in general paeds but had previously been on PICU and cardiac so knows us well. We have also bumped into her loads out and about including Northern ballet, Valley Gardens and various supermarkets. She was so pleased to see Lyall and adjusted his weaning to hopefully make it less difficult to cope with.

Whilst I was in town Sharron had a really scary experience with him. For 4 years if Lyall had secretions we would suction them out of his trachy. Now they are pooling in his mouth and he hasn't quite worked out that he needs to swallow them. The sedation will also be impacting on this and the fact that he is not eating yet. Anyway he began to choke on them which again with a trachy would be easy to sort but not now. Sharron called for help and the ward physio ran in and resorted to suctioning his mouth which resolved the problem but not without a fair amount of panic from Lyall and Sharron. There are clearly going to be new challenges for us all as Lyall adapts to a new way of breathing.

Lyall was exhausted so we took to walking up and down the ward with him in his pram. Eventually
he fell asleep and after being awake for all but 2 hours for 32 hours he slept for 4 hours! He only
woke up when Dan, Max and Max's friend Niamh came to visit which was lovely. He was the most "with it" he had been and they all had a great time. He teased us all by giving kisses to some of us but not others, had numerous photos taken, did lots of smiles and whilst still very wobbly and groggy was the best he'd been. Hopefully we are back on track with the sedation weaning.

After I left with Dan and Max Sharron gave him a wash and she rang me up to say he was really giggly and relaxed. I went back for a bit and we had a lovely time just playing and watching Mr Tumble. Flashes of Lyall showed through and providing we keep the sedation weaning stable we hope we are over the worst! He fell asleep calmly in his cot. Having just spoke to Sharron he is having some dips in SATs as when sleeping on his back but more settled on his front.

So it's been an eventful, exciting and exhausting couple of days but we have hopefully turned a corner and are getting closer to Lyall coming home.