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.

Stressed, exhausted and extremely nervous

Today has been tough. Lyall is much better but had really been fighting against his sedation drugs overnight. The doctors on Intensive Care were hoping that it would be possible to find a slot in theatre today to wake him up but when the surgeon came round he said this would not be possible as the acute list was just too long. He was still very keen to look at the graft prior to waking him up so we geared ourselves up for a day of preventing Lyall pulling his vent tube out.

Lyall almost immediately became very agitated and kept going for his tube and writhing round on the bed. He was coming in and out of sedation and at one point managed to turn himself over on to his front. This is his preferred sleeping position and after a dose of sedation he did settle for a while.

He then however needed physio as his secretions were causing his SATs to dip and heart rate to rise. It took 6 people to hold him down whilst this happened and it became very upsetting but we had no choice. He was too sedated to be left to breathe for himself if he pulled his tube out so if this happened it would have meant an emergency intubation probably requiring strong drugs to do it and setting back the planned extubation by a few days.

It was decided that he would have to be paralysed again as there was no way we could keep him calm all day and all night. This proved difficult as he again became very agitated and no one could let go of a limb to go and get someone to come and set up the drug. Eventually a doctor came in and said "is he on atricurium?(paralysis drug)" to which we answered "does he look like he's on atricurium??" It was a fairly tense period with people ducking under each other to set up infusions, untangle lines and someone jokingly described it as a PICU version of the game of Twister! At this point the Care Quality Commission who are inspecting the hospital arrived on the ward!

Eventually Lyall was still and an extra dose of sedation given to settle him and everyone relaxed a little bit. At one point the CQC were outside Lyalls room and a senior sister popped her head round the door to check all was OK. We asked if we could talk to the CQC and they agreed so we spent 15 mins giving a very swift run down of the last 5 years and praising the quality of care we have received at the LGI.

The rest of the day was calmer and we managed to give him a wash and put on lots of moisturiser as his skin is getting really dry in the warm hospital environment.

Generally though it has been really distressing watching Lyall and there have been many tears. He had so much spirit that it felt cruel to paralyse him but we were told that the sedation would mean he was comfortable and wouldn't remember it. Its blooming hard though as even tomorrow when he wakes up he will be struggling to come off the sedation and likely to be very agitated. He is likely to need weaning doses for a few days so it will be a while before he is back to his true self.

So the plan for tomorrow is to take him off the paralysis drug at 4am then off sedation at 6am. We are going in very early to keep him calm and his hands away from the tube. He will struggle coming off the sedation and be very agitated but has to be more awake before he goes to theatre. The surgeon hopes to get him in mid morning.

Whilst Lyall has been trachy free for a week he has been ventilated so hasn't breathed for himself yet. We are nervous, apprenhensive, scared and also excited about tomorrow.

By the time we write the next blog our lives could potentially be very different..................!

Steps in the right direction.....

Lyall has had a much better day. His infection levels have gone down and he is responding well to the antibiotics. He is managing on a very low level of oxygen and the number of breaths the ventilator gives him each minute has been dropped from 22 to 10 and he is now doing lots of breaths for himself. He has been taken off the paralysis drug again and  a new sedation drug introduced to hopefully keep him steady and not pull his tubes out. He had one little dancing session today but has otherwise been settled.

The surgeon is pleased with all of the above and his plan is to take him back to theatre on Thursday morning, check out his handiwork then take out the vent tube and see how he copes. EEK! He is still warning us that initial success is no guarantee of long term success but he really hopes it will work. He says Lyall will have to adapt his breathing lots and his airway is still small, he may have a stridor and noisy breathing and may just get so tired that a return to the trachy may have to be considered to give his airway time to grow. We just have to hope Lyall copes.

A quick mention of the fantastic nurse we have had for the past 3 nights and tonight. She is so parent/child centred and whilst it's always so hard to leave Lyall at night she makes it much easier. She's fairly new and if she carries on like this will go far. Thank you Grace.

We are very very tired, to the point that I spent 10 minutes trying to get into the wrong car in the hospital car park today!

Lots of nerves about Thursday and tomorrow will be a long day. Looking forward to seeing our little man again as we are missing him sooooooooooooooo much!

Setbacks and dancing!

This morning didn't start well. Overnight Lyall was started on a very strong antibiotic which will hopefully stop the infection. The infection has continued and Lyall is still having high heart rates, high temps,wheezy, secretions. We are still very concerned and worried. Unsurprisingly  it was decided that Lyall wasn't ready to go to theatre to be woken up and taken off the vent. We had a long chat with the surgeon who was lovely but keen to give Lyall chance to get over the infection. He wanted to trial taking him off the drug which is paralysing him so that he would start moving a bit and coughing his secretions.

This did send a few panic waves through the staff who know him well and remember how many times he used to self extubate when he was on PICU 4 years ago. As well as a vent tube he has a cannula in each hand and a central line in his groin all of which are easily removed by a determined little boy with a very strong grip! So the cannulas were bandaged up and the central line covered with a sheet and the drug was switched off.

Things were calm with him taking the odd spontaneous breath, the occasional twitch of his shoulder but nothing too alarming. He did some really good coughs during physio and chewed on the catheter when his mouth was being suctioned.Max came in to see him and Lyall remained calm. However about 10 minutes after Max and Sharron left I was sitting with my head resting on the edge of his cot stroking his head when suddenly his legs began to twitch. Within seconds he had kicked off his sheet and his hands went straight for the vent tube. I grabbed them before he could pull and he opened his eyes and looked at me as if to say " you're spoiling my plan". He continued to wriggle and open and close his eyes. Whilst I was concerned about his tubes it was absolutely lovely to see him dancing round the bed showing us that his fighting spirit is most definitely alive and kicking. I stroked his head and told him to close his eyes and go back to sleep which he did.

Meanwhile the nurse had set up a new infusion of the drug just in case it was decided it was safer to paralyse him again. He stayed calm until Sharron left although his heart rate was beginning to go up.

We've just spoken to his nurse who has had to put him back on paralysis as he has had another dance around the bed and gone straight for his tube. Whilst it's sad to think he can't move it does mean we aren't worrying that he will pull his tube out overnight when it would all be more complicated.

So here's hoping that he continues to fight his infection and by Thursday he will be well enough to be woken up properly so we can see if it's worked.

A difficult day

Just a quick update tonight as we are exhausted and really flagging.

Lyall is not doing very well. He has very thick secretions, high temperature, high heart rate and low SATS. Whilst they have not got the results back to say what infection he has it is fairly obvious he is not well.  He is requiring loads of physio and is on strong antibiotics. They have taken bloods and are testing his urine to try and isolate what it is.

There has been no weaning of ventilation, sedation or paralysis drugs as he is too poorly. he may go to theatre tomorrow so the surgeon can assess how the graft is healing but is unlikely to be taken off ventilation as he would not cope with breathing without his trachy with an infection.

It's been absolutely heart breaking to see him struggle and feel there is so little we can do for him. We have haunting worries about whether he is in distress, whether he is lying there wondering what the hell is going on and why aren't we making him feel better. There have been some tears today from us and it's been hard to cope with. Max has found it really hard and has lots of questions many of which we haven't been able to answer.

Just hoping he picks up tomorrow- the thought of him being sedated for 5 days was difficult to cope with, now it's going to be longer makes it even more unbearable. We are missing him so much and would just love to have him awake and being his vibrant, cheeky, determined self again.

So please keep Lyall in your thoughts and hope tomorrow brings a better day.

Lyall update Saturday! Attempt 2

seems I deleted the previous version of this post instead of the draft version of it so will try again!

Its not been such a good day. Lyalls secretions have become discoloured, his temperature as gone up and he has been needing oxygen. One of the possible risks after this operation is infection. When a patient is heavily sedated and ventilated they are more at risk of infection. As a precaution he has been on antibiotics since the surgery but these have been changed to something stronger today and these are being given intraveneously. Samples of secretions have been taken and tested for viruses and bacterial infections. The virus one has come back negative but the bacterial ones take a bit longer. Its obviously worrying but the doctors are being very proactive and treating aggressively and the nurses are doing regular suction to ensure his chest remains clear. He is also having regular chest physio. What has been good is that they have really listened to us when we said his base temp is always low (36.1) so for him 37.3 is raised. We have also stressed how he often has secretions even if you can't feel or hear them and this has been taken on board so suction is being done really regularly and proving effective.

He is started to twitch a bit in his legs which means he is overcoming the paralysis drugs a bit-nice to see his rebellious spirit shining through!

Depending on how he is in relation to the suspected infection they may start to wean his sedation a bit tomorrow and take him off paralysis in readiness for taking him back to theatre on Monday. This won't happen until the consultant is in as there will be a risk of him pulling out his ventilation tube as he won't like the sensation. Whilst his surgeon said if this was to happen earlier than planned he wouldn't want him
re-ventilated but would rather see how he copes it would be better all way if this was done in a more controlled way on Monday. If they feel the infection has taken hold they are likely to leave him as he is and delay the weaning until he has picked up a bit. We are aware of this happening for other children who have gone through reconstructive surgery.

So plenty of nerves here over potential infections plus the build up to Monday. After we'd had tea tonight we both felt we needed to go back and see him. Its very hard leaving him alone in the hospital and so pleased we can pop back when we want to.We are flagging a bit but the support we are getting is really helping.

Once again we have received such good care and the nurse we have had for the past 3 days has been wonderful.

So please keep everything crossed that he fights this infection quickly and things can go ahead as planned.

Big thank you to our friends in the Tracheostomy UK Support Group who are providing fantastic moral support. xxxx

Little update

Here are some photos from the last 24hrs. Lyall at home before we went in then with the surgeon and anaesthetist then after the operation.

He is still heavily sedated and is being kept on the drugs to paralyse him until Sunday. He is retaining quite a lot of fluids so has been put on diuretics and also has a catheter in. He is having regular chest physio to prevent infections forming in his chest whilst he is so inactive. Feels a bit strange watching other people suction him after years of it being down to us. He gets cross when people come and mess with him, his heart rate goes up and tears come out of his eyes which is hard. However earlier when we told him his favourite stories his heart rate went down so did feel like we are doing something.

Once again we have been inundated with visits from medical people who are keen to see how he's doing. At one point this morning the room was filled with the consultant who used to be his designated consultant when he was in for so long, his respiratory consultant who is just lovely and the  2 long term ventilation nurses who helped us so much from the transition from hospital to home. These were probably the key people in our lives for so many months and again there is so much hope that this will work for him and us. 

The end of a long day

We have just got home after a very long and emotional day. Lyall came up onto PICU at about 2pm. The surgeon is very pleased about how the operation went.

Lyall has had some ups and downs with his heart rate, SATS and blood pressure and he still hasn't done a wee which is a side effect of one of the drugs he is on. He is being given fluids and will be started on feeds via his gastrostomy in the morning. Currently he is being given a drug that paralyses him as well as massive doses of sedation. His vent pressures had to go up a bit to help keep him stable and keep his CO2 levels down.

Its so hard seeing him like this, wondering if he is dreaming, if he can hear us and hoping he doesn't get agitated.But he has 1-1 nursing and the staff are all acutely aware of how quick he can be at pulling out vent tubes if his sedation isn't kept under control.

Dan and Max have both been in to see him and whilst shocked by all the tubes and wires they are OK and glad to have seen him.

The hope is that Lyall stays settled and sedated and keeps his vent tube in until Monday and then they will assess whether its time to wake him up or if he needs to be left a bit longer. He feels that Lyalls breathing will be ok in the day but the challenge will be night time when he may struggle to adapt to breathing through his nose and mouth. He will tire more easily at first and the first few months will be crucial especially the first time he gets ill. So whilst the hurdle of today is over there is still a long long way to go.

Its been weird being in the LGI today as once again it is the focus of media attention. However our experience today has been incredible. We have bumped into numerous people who have been involved in Lyalls care over the past five years. When we got up onto PICU we were greeted with hugs and there was so much excitement amongst the staff about having Lyall back on the ward for such a momentous operation. When I nipped out for a sandwich I bumped into his cardiologist who  threw her arms round me and asked how it had gone. Then as we were leaving we bumped into the surgeon who diagnosed the condition that led him to need the trachy/ventilation in the first place-he had already taken time to find out how Lyall was.

When we are in the LGI we feel safe, we are surrounded by people who have seen us go through the worst of times, who have seen the boy who wasn't expected to survive go on and beat the odds and thrive. After initially falling apart when we had to leave him in theatre, sitting eating lunch in the foyer of the Jubilee Wing we felt OK. Spotting friendly faces, receiving texts from his Long Term Ventilation nurse, getting a phone call from the surgeon to update us-it was all reassuring and all calmed us down.

Facebook has also been wonderful-to know how many people are thinking about us is just incredible and really has helped.

So tonight we sleep in the house without our littlest man. Its a strange feeling. Ever since we ditched our care team in Feb 2012 there has always been one of us with him to meet his care needs. Its strange not listening out for his monitors and glancing at him on the video monitor. When he is ill one of us always stays in hospital with him but parents can't stay on PICU so we've left him as we did every night for 7 months when he was in PICU in 2010.



***We've just rung and he is settled-a catheter has been put in and now he's weeing loads.

Waiting.......

Lyall went to theatre at 10.50. We're not sure how long he will be gone but they will phone us when he is being transferred to PICU. They have warned us that he will have lots of lines and tubes in, we have seen it before but not on a vibrant healthy 4 year old and it's going to be hard.

Lyall was a monkey right up until the pre med-still convinced it was his job to pull the trachy out and did it once at home, once in the car, 5 times on the ward and once in the corridor whilst we were trying to distract him!

As per usual when we are here we have bumped into numerous people who have cared for Lyall over the years. Today we saw the obstetrician who scanned me weekly from 20weeks and was so so lovely, respectful and caring. She hadn't seen Lyall since he was tiny and knew little of what he has been through over the past 4 years but was so supportive and excited for him. A matron, numerous nurses and even an MP have wished us well and the excitement they feel for us and Lyall about the potential of this surgery is wonderful.

A report has come out today saying the LGI is safe, we don't need a report, we know it and Lyall is proof of it.

Will update later when we know more about Lyall.

One more sleep-(though doubt there'll be much sleeping)

We may not sleep tonight but lets hope these 2 people are. This is Mr Knight the surgeon and Dr Bew the anaethetist. Dr Bew has been putting Lyall to sleep since 2009 and is absolutely lovely-she also happens to be called Steph! Mr Knight has been tinkering with Lyalls airway for 18 months and wouldn't be doing this operation if he wasn't confident of success. Lyall couldn't be in safer hands.

Lyall is still oblivious although must keep processing the words "trachy out" as he has once again spent the day pulling it out at every chance he gets. He's had another lovely day, the high spot being a surprise germ free delegation of his friends from playgroup who brought him a lovely card that had pictures of all his friends on. Also his 1-1 from playgroup, Helen has brought him a banana-his favourite fruit.Seems they have a surplus whilst he has not been there for snack time! 

We've packed his suitcase-its mainly full of various lucky items we have collected over the years plus new ones people has brought him for this surgery. We have the lucky Buddha that max brought him from the pound shop when he had his first emergency heart surgery at 4 weeks old and the love catcher that we put on his cot to catch all the love being sent by people-think it will be kept very busy through this surgery as the support we are getting from people is overwhelming.

Lyall will once again be wearing his Superman onsie tomorrow and Oliver the trachy monkey is delighted that thanks to Helen and Helen he too has a superman outfit. Oliver is also having reconstructive surgery tomorrow and hopes to become trachy free too!

Our feelings tonight are fairly indescribable. At teatime it suddenly hit Max that when Lyall comes home he hopefully won't have his trachy-the realisation of what that may mean for Lyall and us all are hard to imagine.

For 4 years and 15 days that little plastic tube has been Lyalls lifeline, his airway, the thing that saved his life and for that reason we love it. 

So tomorrow we face this next challenge.  

Super mummies clinging on to sanity!

Super mummies clinging on to sanity..........This is a phrase which came about when the son of a good friend of ours was going through heart surgery last year, Lyall was going through a rough time with his health and the whole world seemed to be wanting to close down our heart unit! It aptly sums up how we are feeling at the moment.Tonight wine seems to be the answer to the questions that are whirling round in our heads.

Lyall is becoming very unsettled by the lack of normality. Whilst we are having some lovely times he has clearly picked up on some of our anxiety. He signs playgroup every morning and desperately wants to see his friends. On a walk in the park today he saw a group of children and signed children and went up to them and said hello.

His solution is to constantly pull his trachy out-something that used to cause panic but now is so much a part of our lives that a few mumbled swear words under our breath, a putting back in of the tube, a smug look from Lyall that says "I'd like to see super nanny ignore that attention seeking behaviour" and then everything is sorted until the next time..............

Yet again today we have been so grateful for the support we are getting from people. Presents and cards are filling shelves in our lounge, a special thank you today to Josh and Lorna, Kris and Millie, Cardita, Oliver, Sophie, Toni, Natasha as well as all the lovely people who have sent or given Lyall things in the past few days. Also the staff in our local Coop who are all willing him to succeed.

Lyall is so much a part of the community we live in and really has the ability to draw people in. Despite all his health challenges we have always done all we can to make sure Lyall has a full and active life and as a result he is a confident, communicative and popular boy.

Can't really imagine how we will feel tomorrow. Possibly Lyalls last day with a tracheostomy but we'll see. Lyall is very much in control and does like to do things "his way"!

Busy Days and sleepless nights

Its all getting so close now and we are so scared. 

Days are spent having special times with Lyall and he is loving it. He has such a spirit, is such a character and sucks every last drop of pleasure from everything he experiences. Today at the Yorkshire Sculpture Park he waved at people, kicked his ball, jumped off logs and generally bossed us all around. When we were having a cup of tea he wandered round the cafe area signing "ice cream" at those eating ice creams, "chocolate" at the person eating chocolate and helpfully signed to some people that they had a dog under their table. He was confident and engaging and all we could think about is that this time next week he will be in PICU and we will be wondering whether or not the op has worked. Lyall is oblivious as to what is going to happen. We try to tell him he is going into hospital, show him photos of the surgeon, talk about his trachy going but its beyond what he can understand.

He is so so well, the best he has ever been and to put him through something so huge feels like a massive responsibility. There are risks. It may not work or his vocal chords could be damaged, his swallow could be affected, he may contract infections.......BUT the potential benefits are massive. 

The nights are so hard, all the fears come to the fore. Racing hearts, panic, doubts. One of us has to sleep with Lyall at the moment and many hours have been spent just watching him sleeping. When he stirs attempts to get him back to sleep in his own bed have given way to letting him snuggle up in our bed. He has a habit of wanting to sleep with his cheek touching ours or with his arms wrapped round your head. At the moment its fine, almost reassuring and makes you realise how trusting he is off us. 

We have to take that trust and do what we feel is right for him. We know that if it wasn't for us he probably wouldn't have survived. We have done all we can to make him into the confident, beautiful, inspiring boy he is and we couldn't be prouder of him and us!

Massive thank-yous to everyone who has shown us so much love and support, for all the cards, the gifts, the kind words. It really is helping. 

1 week to go!

Today has been a funny kind of a day. Its one week to go until the surgery and from the moment we woke up its dominated our thoughts.

By this time next week the operation will be over and our little man will be ventilated and sedated in PICU and we will be waiting. The period he is in theatre will be tough, we've been through that enough times to know that its surreal. We've been through seeing him ventilated and sedated but this will be so different. Last time he was a tiny and very very poorly baby who had been through life saving heart surgery.

This time we are handing over a vibrant and lively 4 year old who healthwise is the best he has ever been. He has no understanding of what is going to happen, we do keep showing him a photo of the surgeon and saying Mr Knight is going to put him to sleep and when he wakes up he won't have a trachy but he just shakes his head and says no!

The post op period will be so hard. We'll miss his little voice, his signing, his laughter, his cheek, his sense of humour and his all round loveliness and smiles! But we'll be hoping beyond hope that the surgery will enable us to have all of that plus more. Neither of us are able to get too excited about what might be-we have to get through the surgery and post operation bit first and if Lyall is true to form that won't be plain sailing.

This week is only going to get harder and Lyall will probably get slightly annoyed by the random bursts of love and kisses we will keep smothering him with and the fact we both seem able to cry at the silliest things. But by this time next week we will have begun the process and hopefully be one step closer to having a trachy free boy!

Running down hills and a wonderful gift

Today started with a visit from Lyalls friend Thalia and her mum Ailith. They shared chocolate brownies then we all went to the woods. The pleasure they got from climbing a big hill then running down together was infectious and there were lots of lovely smiles and giggles. Thalia is obsessed with Lyalls suction bag and loves to try and give him a suction although he is less keen on the idea-think she'll probably be the only person slightly disappointed if the surgery doesn't work! 

Then we came home and the postman delivered a beautiful present for Lyall. Our friend Clare has over the years sent Lyall the most wonderful gifts. Pictures for his wall, his fearless lion cuddly toy who has been with him through the darkest times, his first superman outfit and numerous cards. Despite living 200 miles away she has been an amazingly supportive friend and has been with us through so much. Today she absolutely surpassed herself with Lyalls latest pressie-a personalised book with a boy who looks like Lyall, a lion, rainbows and the final page  has words that are so perfect we both sobbed when we read them.

"He felt so tired and weary, yet also full of joy. What a quite amazingly brave and courageous little boy-called......LYALL"

Donkeys, Pancakes and Big Brothers to be proud of!

Well if we could bottle the support and well wishes we are getting from people and give it to Lyall for breakfast on 13th then he'd sail through the operation and recovery period with no problems!

He had his last trip to donkey riding today and all the staff, volunteers, other parents and one of the teaching assistants were absolutely lovely and wished him luck and well wishes. It was so touching and we are so grateful for all this support. 

Then it was home for tea and Lyalls first ever pancakes. He didn't orally feed until he was 3 and took a while to cope with some textures. Today however he had no problem demolishing 2 pancakes with ice-cream and chocolate brownie. He loved watching Sharron and Max tossing the pancakes and had lots of giggles with Dan who he does like to boss around!

We explained more stuff to Dan and Max about the surgery and talked through with them what they'd like to do on the day of surgery and on the day Lyall is woken up. Dan wants to be at college as he finds it a good distraction. Max is undecided as to whether he will go to school or be with Grandma and Grandad but whatever he chooses is OK by us. All this is hard for them. They have seen and been told things with Lyall that are so hard to deal with and still find it difficult when he is in hospital. Max doesn't even want to talk about the possibility of the operation being successful as he says its too exciting and would be so disappointed if it failed. We are incredibly proud of both of them and whilst there have been tough times with Lyall they each have their own unique bond and relationship with him. They are both so compassionate and caring and are really fantastic big brothers. Lyall hasn't got many words but the names of Dan and Max(who he calls Baah) were his first! 

Consent forms, Runners and Seagulls

Today we had an appointment with the surgeon to go through some of our questions and sign the consent form. We asked him to go through the whole procedure which he did and lots of things became clearer. 

First he will do another full assessment of the airway and if there is any inflammation he won't continue. However if things look OK he will continue and take out the piece of rib. He'll then open up the airway and graft the rib into the weak areas, sew him up and he'll be moved to PICU and then we wait! 

He completely took on board our concerns about sedation and the amount Lyall needs to keep him under. He acknowledged that there would be withdrawal symptoms from this and this would be distressing for us and Lyall

Even if initial signs are good when Lyall is woken up and the ventilation tube removed the night times will be critical. Lyalls breathing may be more laboured, he may require some oxygen and he may even have apnoeas. Even if things are OK initially things can still fail after a few days/weeks. The first illness will be telling. Its certainly not going to be straightforward. He said some parents even miss the trachy which is something we can relate to and something people have talked about in our Trachesotomy UK support group.

However we were left in no doubt that he wouldn't be attempting this if he didn't believe it was the right thing to do and that there was a very high possibility of success. So we signed consent form number 20 and in 10 days we'll be back!

Walking back through the hospital we bumped into 2 of the physiotherapists who work on PICU. Lyall was running along the corridor and they didn't immediately recognise him but were so delighted when they saw him looking so well. They had heard he was due to be having the surgery and are very excited for him and us. Apparently he is talked about lots and loads of people in the hospital are absolutely willing it to succeed. When we bump into people who saw us on an almost daily basis through the most challenging period of our lives it is a unique feeling. They understood our fears but also get the potential of what this could mean. We are so pleased that there will be lots of familiar faces working in PICU when we are there- we need that support to help us cope whatever the outcome.

We then went to Roundhay Park where Lyall loved watching the runners and signed "running" at each one who went past. He made us do some running with him which makes him laugh a lot! We then all laughed at at seagulls sitting on posts and wondered what they were all waiting for! And why did one post not have one on? Good to have something else to think about momentarily. Thanks seagulls!

"# 10 smiley days" with a bucket full of tears thrown in!

lots of our friends are doing #100 happy days. Today we started our own version......In the lead up to his operation we will be doing #10 smiley days. We started with a trip to Ilkley Park followed by tea and cake in our favourite cafe-Outside the Box.

The smiles are mixed with lots of tears as we are finding the build up to the operation really tough. Lyall has had lots of major operations but there is a difference with this one. The others saved his life and we didn't have a choice. He was critically ill and without either of his heart surgeries, his tracheostomy and even his stomach surgery he would have deteriorated and died. He is stable at the moment, his life is good and he is thriving. Compared to the boy who was clinging onto life in PICU 4 years ago and compared to the boy who came home on 24hr ventilation things have dramatically improved. We could decide not to do it, we could wait and see if his airway gets bigger over time but there is no certainty that it will.

We have agonised over this. Lyall has never taken the path expected of him. His heart wasn't supposed to fail after 3 weeks and require surgery at 4 weeks. After his stomach surgery he wasn't supposed to have episodes of terrifying erratic breathing and the epidural fail. After his 2nd heart op he wasn't supposed to present with a rare breathing condition requiring long term ventilation and after his trachesostomy he wasn't supposed to take another 5 months to get established on a mobile ventilator as his lungs were so damaged.

This is why we are terrified but we have to take this chance. Lyalls life would be very different for him without his trachesotomy.

For Lyall we will face our demons and for Lyall we will be strong.

We have a quote on our wall by Ralph Waldo Emerson which we say could have been written for Lyall

"Do not go where the path may lead, go instead where there is no path and leave a trail...."

1st March and a great ball of "snot"

Its the 1st March so Lyall will be having reconstructive surgery this month!! Gulp!!

We took Lyall to the Valley Gardens in Harrogate today and he had a play in the playground then kicked his ball around the park. It was quite chilly which he always struggles with as the cold air blows straight into his airway through his trachy even when its covered with a bib. He suddenly started to get very whistlely and agitated so we stopped to give him a suction. His tube was almost blocked and we had to put some saline down to loosen up the secretions. He did a big cough and an enormous secretiony plug (snot ball) flew out and he smiled as he could now breathe again. We also breathed a sigh of relief as the next step would have been an emergency tube change which although is something we do fairly regularly isn't something you particularly want to do on a park bench with a load of passers-by gawping at you!

Apologies if anyone finds this a bit yucky but this is our daily reality. Lyall relies on that tube to breathe and we have to be constantly vigilant to make sure it is clear. Blocked tubes can happen quickly with no warning and its scary.

We can never go anywhere without his suction machine and he can't ever be so far away from us that we can't hear his breathing. Lyall can tell us by tapping on his trachy if he thinks he needs a suction and "bag" is one of his very clear words as he will sometimes check we have it with us.

Despite our fears about the surgery its hard not to imagine life without the trachy, without the "bag" and without the feeling that you are always one snot ball away from an emergency!