Don't stop believing!

This was Lyall on Sunday saying thank you to the man who fixed his airway. Mr Knight is really really pleased with how well Lyall is doing and said on Sunday that as far as he was concerned Lyall could go home as soon as we were happy. We opted to stay a couple more nights just to see how Lyall coped overnight with his breathing and the withdrawal from the sedation medicines. He also had copious amounts of nasty poo which ended up being a reaction to medicines not a bug which was a relief!

Sunday continued to be lovely. We decided to have our first trip off the ward with our equipment free boy. It felt very strange just taking nappies and a change of clothes and the pram looked very empty. These 2 photos show our trip on Sunday and our first trip out from PICU in 2010 when we have a mini PICU ward loaded into the pram. Both walks were relatively short but represent massive milestones in our journey with Lyall!

On Monday we spent the day mainly watching TV with Lyall who is still very very groggy as he is weaned from the sedation medicines. A steady stream of staff from around the hospital popped in to see him including his respiratory consultant who we love to bits. He spent 5 minutes playing boo with Lyall from behind the door before coming in with his registrar and attempting to briefly fill her in on Lyalls medical history! He was delighted to see how well Lyall was doing. The manager of the Long 

Term ventilation team also came and one of the matrons who has been so supportive over the years. The genuine pleasure and excitement that all these people have shown is just lovely. 

Lyalls big achievement on Monday was to take all his food orally. The operation will have made his swallow feel very different and whilst he has only had puréed food and yogurt so far the fact that he is eating is incredible. He is also making some really good noises and sounds that we have not heard him do before. 

Today we knew we felt confident enough to go home. We had both spent a settled night sleeping next to him, well he was settled, we have yet to master sleeping well on a narrow hospital bed with nurses popping in and out to give medicines and other kids crying etc! 

We had to wait around to be given medicines for discharge as Lyall needs to continue being weaned 

off his sedation. We packed up all his stuff and then decided to go off on a tour of the hospital to say thank you to staff on various wards who have looked after Lyall over the years. We started with PICU and that was very very emotional. We both cried as they all stood around Lyall for this photo.

Whilst all the staff are brilliant a particular mention must go to Sharon Frost who is in the middle wearing dark blue. She looked after Lyall  at 4 weeks old after his first heart surgery and helped us deal with the shock of what had happened so soon after his birth. When Lyall was in Cardiac PICU after his 2nd operation she was so supportive particularly with helping us support Dan and Max. It was strictly no visitors due to swine flu concerns but after Lyall almost died on the night before Max's birthday she allowed. Max to visit and when Dan was struggling she told us to bring him in and enabled him to hold Lyall safely even though he was on one of the big hospital ventilators. last week she was so lovely as she really understood what bad memories it would bring up for us have Lyall back in PICU. Today she and us just sobbed as we remembered the time I begged her not to let Lyall die when he was in respiratory arrest. She is a wonderful woman and clearly has never lost sight of how hard it is for parents to see their children going through horrendous times. If you happen to read this Sharon, you are simply the best! 

And so we continued our hospital tour visiting the cardiac ward and the ward where trachy patients go when they are admitted. Everyone is so happy for us and Lyall. Never has a boy had so many fans! Then it was back to the ward, a quick refresher in Basic life support training as it's different without a trachy, a run through of what medicines to give when and then we set off on the short walk out of the hospital, into the car and home. We went out of the same exit that we used when he was first born and in many ways it felt very similar. Life will be very very different for Lyall and us without his trachy and this most definitely feels like a new chapter in our lives. When we got in the car the radio came on and "going home" by the Kaiser. Chiefs was playing!!!!! 

And so to home. Lyall was so excited in the car and kept signing home and saying Dan and Max. We were so excited driving up the street and when we saw our front door we both burst into tears again. 

Welcome home banners, balloons and bunting were decorating the door. Thank you to Ailith for doing this! Our neighbour who is a nurse on one of the wards Lyall goes on rushed out with her friend who works in our chemist. There were lots more hugs and tears and it was such an unexpected and beautiful homecoming. Dan was in and Lyall loved spending time with him whilst we unpacked. The Max came home and played with Lyall. Lyall is so happy to be back. He's still very wobbly and when he tries to stand up he looks like Bambi on his shaky legs. He went off to bed early and was clearly very happy to be sleeping in his own bed. 

We decided to have a takeaway with the big boys and I nipped to the Coop prior to picking it up. "Don't stop believing" was playing as I walked round the shop. It was all I could do to stop myself dancing down to aisles singing at the top of my voice. We have never stopped believing in Lyall and will continue to do everything we can to ensure he lives life to the full and sucks very last drop of pleasure from all that he experiences!