Its getting better and better!

So its slowly sinking in-Lyall doesn't have a trachy and that opens up so many possibilities...........!

Today started with a visit from his brilliant and lovely speech therapist who was very excited about the new sounds he is making especially "G" and "C" as apparently they are really hard yet his are perfectly formed.

Then his community nurse came and she was equally happy to see him without his trachy. He was weighed and it was great that despite all he has gone through recently he is still the same weight he was last time she came. She also thinks he's got much taller so clearly he did some growing despite being sedated and ventilated for a week.

Then it was play time..........!

Lyalls friends Aiyana and Thalia came to play and it was just fab. Previously it was hard looking after other kids as someone had to focus on Lyall all the time. Thalia was very attached to Lyalls suction machine and given half the chance would open up the bag and lunge towards him to have a go at suctioning. Shes probably the only person who is disappointed its gone. She was however fascinated by his gastrostomy and after watching him have some water down his tube went off and constructed her own feeding tube construction out of some pieces of marble run!

We then did baking, painting, music, and even had moments of them playing in another room without us watching. Lyall and Thalia were chatting and giggling and when we went to check as things had gone quiet they were playing happily with the contents of the "sticking" drawer which were spread in a beautiful mosaic pattern across the floor! The painting was so lovely as today it didn't matter when they painted each other, even when Thalia did some lovely blue brush strokes across Lyalls neck!

Grandma and Grandad also came to visit and are building up to having Lyall on their own later this week-something that has never been able to happen before!

Then Thalia and Aiyanas parents, Kevin and Ailith came for tea. Ailith is recovering from running the Manchester marathon yesterday for our Leeds Down Syndrome group and raising over £1000-what a star she is!

We finally cracked open the bottle of prosecco they left on our doorstep on the day of Lyalls operation as we have lots and lots and lots to celebrate.

Its the little things that are actually so huge!

Just a quick update but very exciting developments today!

We took Lyall to see his good friend Isla. All the kids were playing upstairs. Previously this would have either meant one of us sitting upstairs with him, the game being relocated downstairs or him staying with us. Today however he played upstairs with no mummies, no suction and no worries! The sounds of his giggling kept drifting down the stairs and we could hear him bossing everyone around!

Then we came home and Max had a friend round. They decided they'd like to take Lyall out for a walk in his pram so after a quick agreement of what route they were going, checking of mobile phones and a run through of "what ifs" off they went. Apparently Lyall giggled lots but then it rained so home they came as the typical teenagers had gone without coats!

Generally calmer waters but still some choppy bits!

Its now just over 3 weeks since Lyalls operation, just over 2 weeks since he was woken up and 11 days since we came home. Its also been a period of time when we've gone through every emotion known to mummies except perhaps the one we would have perhaps anticipated given how successful things have been. We haven't yet felt "euphoric" which may sound a bit strange given how life changing the last few weeks have been.

However in all reality we think that’s probably fairly understandable. Things haven’t been easy since Lyall came home. He was still very dependent on morphine and has been weaning off this for over 2 weeks since he was woken up. This had a dramatic affect on him making him shaky, pale, disorientated, cross, had no appetite, no energy and generally not the Lyall we know and love so well. He really struggled with eating for ages and we had to resort to blending up food and putting it through his gastrostomy just to ensure he was getting some calories. He wasn’t weight bearing on his legs and was just sitting still on the sofa or in his pram. It was all really hard and on Thursday we both admitted to each other that we were getting worried as to whether something had happened.

Over the past 2 days he finally picked up a bit and has finally come off the morphine. He is eating lots more, is interacting more and looks much better. He’s still not walking without holding our hands but you can’t blame him-suspect if any of us had gone through what he’s gone through we’d still be lying in bed demanding 24hr care! Initially we just wanted to take him out and show off our amazing breathing boy but had to slow down and take things at his pace!

We have however noticed some remarkable changes since the operation and every day new things happen. The best thing has to be his giggle. Lyall has always been a happy boy with a big smile but what we’ve realised is that this smile was actually a full blown laugh which comes up from his toes and tumbles out of his beautiful mouth. He’s also started to try and say so many words. They’re not clear yet but he’s having a go and that’s just wonderful-tomato, shop, café, menu, Courtney(girl in fav Something Special episode), no, gone(as in trachy gone!), dvd, custard, apple, tea and lots, lots more. Words he could say before such as friends and family names are much much clearer. Blowing down a recorder is another amazing achievement, maybe by his birthday he might be able to blow out his candles! Bathtime has been so much fun-previously it was all a bit fraught as we tried to avoid getting any water down his trachy, Now he can have deep baths with lots of splashing, tipping out of water from jugs and generally an experience where anyone close by ends up being soaked as well!

Going out anywhere has been so much easier. We just get in the car and go-no suction bag, no emergency bag, just nappies and a change of clothes and we’re off! This morning we popped over to York to get something that wasn’t in stock in Leeds-we had a momentary worry as to whether we should take suction, oxygen etc but didn’t-no trachy means no need for emergency equipment and that’s a change we are going to have to get used to! We even managed to put shopping in the basket under his pram-an impossibility before.

So yes things have changed but no euphoria yet…..! As we said in previous blogs, its been an exhausting and over whelming 5 years since our 20week scan and all of those feelings can't just disappear in a few days. We are shattered but not just from the past few weeks, its like 5 years of tiredness is catching up with us. We had a life with routines set up around Lyalls medical care and are only just realising how much time things took. We seem to have gained an hour in the morning and one in the evening plus time in the day when we used to be suctioning, checking bags before leaving the house, one of us sitting next to him to prevent him pulling the trachy out etc etc. We've also gained shelves and cupboards that were full of supplies and space by his bed that used to have a suction machine and box of catheters. We haven't yet gained sleep as we still wake up to every change in breathing, every wriggle and he has had periods of being very unsettled overnight as he is weaned off the morphine.

But things are good and that is lovely. Everytime we see someone we haven't seen since before the operation it all becomes a bit more real. Peoples responses have just been lovely and we couldn't have got through this without all the support and love we have received from people.

Lyall goes back in to hospital on 17^th to have a review under general anaesthetic. The surgeon will look at his airway through a camera and remove any granulation that has grown and check the graft is healing well. That will be GA number 22 and his third in 10weeks. But hopefully it will be his last for a few months and we can enjoy some settled time before he starts school in September. 

We've got some big plans to try and raise some money for the hospital so watch this space for some exciting news in the next few days.....................!

Coming out of the Storm!

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.”  Haruki Murakami

Today has been spent reflecting on the past 5 years and thinking about the future.

For the first time in Lyalls life we have nothing hanging over us. No impending or potential surgeries to get through, no wondering if he will come off the vent, whether he will ever breathe without his trachy, no constant worries about if his airway is clear, if we have all the equipment we need with us, will he pull his trachy out etc etc etc.

Leaving the hospital yesterday it almost felt like I was finally starting my maternity leave-that window of time between having a baby and going back to work, that time when you bond, have fun and do new things. Obviously we have had a fantastic time with Lyall over the past 4yrs 9months and he has thrived however there has always had a shadow of uncertainty alongside all of those times. Our first concern when doing anything has always been Lyall and is he medically safe. At times most people were not even aware of the level of vigilance we have had to have, I suppose we started to make it look so natural and on the whole stayed so calm that what we were doing just seemed “normal”. Indeed for us it just became a part of our lives but one you could never ever become complacent about.

Looking after Lyall has been a 24hr job. Once we stopped having carers overnight we took turns in sleeping in Lyalls bedroom which meant a disturbed night. He always needed some level of medical intervention overnight and you would wake up to any change in his breathing pattern or unexpected movement or alarm from his SATs machine. Nothing could be ignored in case it was a blocked tube or the tube coming out. Then there were the daily routines-checking,cleaning and charging up his equipment, ordering medical supplies(from 3 separate places), changing his trachy tapes, ensuring his suction bag was always full of the necessary supplies, making sure we had spares of everything in the car, the list goes on……! Things changed when he came off the ventilator and did get a bit easier but we still had so much to be aware of before even embarking on a simple walk to the woods! We lost count of the number of times we would arrive somewhere with everything necessary to save his life but no nappies or change of clothes!

Despite all of the above we have never once resented the trachy or the ventilator when we had that. Without those things Lyall would not be here. We don’t really see ourselves as being “trachy free”. Yes Lyall no longer has his trachy and is breathing through his nose and mouth but to be free of something implies it was something that was negative. Yes it affected our lives but we cannot see something which in reality gave Lyall so much freedom as a negative thing. We know many many children who will always have their tracheostomies and many who will always be ventilated. Those children and their parents absolutely live life to the full and achieve the most amazing things. Lyalls life now is not any better than theirs, it is different to how it was but we see that as a new chapter for us. This period of time will always be fundamental to who Lyall is as he grows up. It has shaped his early years and the challenges he has faced at such a young age will go on to impact on his life for a long long time.

When we went for my 20week scan just over 5 years ago and found out about Lyalls heart condition, probable Down Syndrome and other “potential” health issues we were plunged into a world we knew little about. We were terrified and felt very alone. If we’d known then what we know now things would have felt very different. Despite the scary times of which there have been plenty including many in the past 2 weeks, we have also had some incredible times and done things we would never have thought possible. We have become medically competent and have an understanding of Lyalls health needs which means we are able to advocate for him in the most difficult of situations. We have become involved in and helped develop and set up support groups such as Sunshine and Smiles-Leeds Down Syndrome Network and the Trachesotomy UK Support Group. We have been involved in the most incredible campaign to Save the Childrens Heart Surgery Unit at Leeds appearing on local and national TV, radio and newspapers. We have learnt Makaton sign language and helped Lyall to gain a voice despite the barriers he faces in learning to talk! Most of all we have formed friendships with people through all of the above who we know will be friends for life. Some of these people we have yet to meet in person but we will in time. Shared experiences and struggles can mean friendships form across the internet. Many a time a virtual hug has been what is needed to get us through a tough patch!

So as we embark on the next period of Lyalls life we will never ever forget this time. We are looking forward to really really enjoying this time with Lyall before he starts school in September. If we are perfectly honest we feel a little bit cheated, almost like we have spent the last 4+ years keeping him alive and just as we get a bit of worry free time with him, he’ll be going off to school! So watch out Lyall because your mummies have got lots to cram in with you before September! Shall we start with swimming???????

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!

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.

He's only gone and done it!

Very quick update but just to let everyone know Lyall went to theatre at lunchtime and the surgeon was delighted with how the graft had healed. He was then taken off the ventilator and came out of theatre breathing for himself through his nose and mouth, something he hasn't done since he was 7 months old.

He is still very drowsy and needs his sedation to be weaned slowly as he has become a bit dependent on it and they don't want him to suffer withdrawal symptoms.

The most magical moment was when he opened his eyes looked at us both and said "mummy"

There have been lots of tears from us and also from staff on PICU who have been part of our lives since he was tiny. We cannot thank the LGI enough for all they have done for Lyall.