Operation germ avoidance begins!

So today marked a significant day in the build up to Lyalls surgery. It was his last day at playgroup. We can't risk him catching anything yucky prior to the operation so decided it was best if he was away from large groups of small children for a while. The last thing we want is for the operation to be cancelled because he is ill or worse still that he is brewing something at the time of the op that then rears its ugly head and becomes problematic during the recovery period.

Lyall is really popular at Playgroup and whenever he is off as he is sick or has an appointment children ask where he is. It was decided that we would explain to them that he wouldn't be there for a while as he is going into hospital and their responses were just lovely. As Sharron started to say about the operation one boy said "Lyall has a tube in his neck to breathe", another said "I've got a doctors set", others began to talk about their poorly legs and other ailments. One girl said "I'm going to remember to tell my mummy and daddy". Then they all said good luck and thank you as Lyall had taken chocolate treats for them all!

Lyalls playgroup is just brilliant and we couldn't have chosen a more dedicated, committed and inclusive setting for him to start his education. We have had to take turns to be there to support his health needs and today I was acutely aware that next time he goes he may not have a tracheostomy and may get to the stage of us not needing to be there.

We have an appointment with the surgeon on Monday to ask our zillion questions-feel one of our legendary lists coming on! Then the next 9 days will be spent doing fun things with Lyall.

Happy Trachiversary Lyall

Its 4 years today since Lyall had his tracheostomy. At the time he had spent 6 weeks totally ventilated and sedated in PICU following heart surgery. Weeks of tests had shown he had a rare condition called bronchomalacia meaning his airways were collapsing down and he would need long term 24hr ventilation. The trachesotomy was a massive step forward as it would mean we could start to hold him, cuddle him, learn to care for him and eventually bring him home. Best of all was that we could se his lovely face again as it was no longer covered in the tape that held the vent tube in his nose.

The hope was that he would quickly become established on a mobile ventilator so we could start taking him out but in reality this took many months as his lungs were so damaged.

That little tube has given us so much and whatever happens in the next few weeks we will be forever grateful for the chance it gave Lyall.

Lyall has marked this special day by doing his first ever poo on the toilet! Clever boy!

Our little man is famous!

http://www.yorkshireeveningpost.co.uk/news/latest-news/top-stories/life-changing-surgery-for-leeds-boy-1-6456096#.UwhN8ICNQTo.facebook

Thanks to Katie Baldwin at the Yorkshire Evening Post for doing this brilliant article. The YEP have followed Lyalls progress ever since they featured him in an article about the Save Our Surgery campaign in 2011!

Without the Heart Unit at Leeds and the co-location of all Childrens services in one hospital Lyall may not have survived. We are forever grateful to the LGI and will continue to do all we can to ensure that Childrens Cardiac Surgery remains in Leeds.

Feeling a little overwhelmed!

Since we started telling people about Lyalls forthcoming operation we have been absolutely overwhelmed by peoples responses and feel very loved and supported. Our friends and family are all being fantastic but its the wider people who have heard about it whose comments are so unexpected yet really touching. Staff at our local Tesco's are following his progress as is his hairdresser. Parents from playgroup, friends of my parents and people we have never met but know through support groups on Facebook are all willing the operation to be a success.

Then today we were contacted by the health correspondent from the Yorkshire Evening Post who has done a number of articles about Lyall in the past as a result of our involvement in the campaign to save our local heart unit. She was very excited and wanted to do a story and sent out a photographer to get up to date pictures. So local folks look out for that article tomorrow or Monday and if  we can work out how we will post it on here too.

A special mention must go to all our friends in the Tracheostomy UK Support group on Facebook who have helped us so much with making the decision to have the operation. We are particularly grateful to those who have previously shared stories of their children's reconstructive surgery as we can ask them questions and get answers that you just can't get anywhere else.

We had considered not telling people about the operation but are so glad we have as everyone's support is incredible and will really help us through.

Why does Lyall need this surgery?

http://www.chop.edu/service/airway-disorders/open-airway-surgeries/single-stage-ltr.html#.UvVLv2zAQqM.facebook

A little bit of info about Lyalls operation. The above is a link showing a video of the actual operation.

Lyall will have had his tracheostomy for 4 years on 25th Feb. He originally needed it as he had a condition called broncho/tracheo malacia meaning his airways collapsed down making it impossible for him to breathe. He needed 24hr ventilation and therefore he had a tracheostomy to make this process easier and enable him to become established on a mobile ventilator. 

Lyall stopped being dependent on the ventilator in March 2012 and 2 attempts to decanulate (remove the trachy) followed but were unsuccessful. Further investigations showed he had developed a condition called suprastomal collapse meaning his upper airway was collapsing down making it impossible for him to breathe without the trachy. This was probably due to the fact he hadn't used his upper airway since having the trachy. He also has a smaller airway due to his down syndrome. There are also areas of scar tissue and there was lots of inflammation.Over the past 18months Lyall has been having regular reviews of his airway under General Anaesthetic with the ENT surgeon Mr Knight at the LGI. Throughout the course of this period the surgeon has removed granulation tissue, taken out his tonsils, done some work to make the epiglottis less floppy and generally monitored his airway to see if it was getting bigger.

 

At the last review on 6th Feb the surgeon said it was looking the best he has ever seen. Whilst he doesn't feel Lyall will cope if his tracheostomy were just removed he feels the time has come for him to do a full reconstruction of his airway which if successful would leave Lyall tracheostomy free. This surgery is taking place on 13th March. The operation will take up to 6hrs and then the recovery period is very hard. A piece of his rib will be removed and grafted into the 2 floppy areas in his airway to hopefully strengthen them. Lyall will be sedated and ventilated in Intensive Care for at least 5 days to allow the graft to heal. He will then return to theatre where he will be woken up and at that point they will know if it has been successful.

 

To say we are terrified is an understatement but we have to give Lyall this chance to be free of his tracheostomy. If it works it will be life changing for Lyall and for us and for him to go into school in September without his trachy will be fantastic.

Sleep.............who needs it!

With just over 3weeks to go the ability to sleep seems to gave deserted us. Minds racing overtime, hearts racing and even when we are asleep such crazy dreams that you wake up exhausted anyway!

Hopefully today we will get a date for a pre op appointment with the surgeon so we can ask some of the zillion questions which are whirling round in our heads.

Steph zzzzzzzzz

Hello

We appear to have succeeded in creating a blog! So why have we done this?

Our son Lyall is due to have major surgery to reconstruct his airway on 13th March. We wanted to find a way of sharing this with friends and anyone else who is interested without us having to send texts, emails or have conversations with people at what will be a very trying and testing time for us.

It may also give us a place to express how we are feeling in the lead up to the operation and during the difficult period post surgery.

Anyway that's it for now.

Steph and Sharron
Lyalls mums