We spent this afternoon at Sheffield Children’s Hospital with Rory.
It was his 3 monthly consultant appointment with Dr Rob from Respiratory.
We have been very lucky to have some fantastic consultants looking after Rory in ENT and Respiratory. Doctors who are real people and who have built great relationships with me and Ash and with Rory too and who know us, and I mean really know us, not just flicking through our notes whilst we walk down the corridor from the waiting room. These Doctors are 100% on board and 100% Team Rory.
Dr Rob has a huge amount of respect from Mummy & Daddy because at one of our darkest hours, in a room full of doctors and consultants from so many areas of the hospital when Rory was really struggling to maintain life, shortly after having his trachy put in, and having contracted several infections, Dr Rob stood up, and took control. He took responsibility and he crossed the line of what his then role (He has only recently become consultant and rightly so – he deserves it) was, understanding our frustrations and our worries and taking control, advocating on our behalf and managing the multi-specialism team of doctors all with their own agenda and no joined up thinking. He saved us and he drove forward the care to get Rory well again. We will always thank him for that.
Anyway, this afternoon, we arrived at the hospital and Rory was his usual ‘unphased’ self. He was called into the weigh room to be measured. It is much easier now that he doesn’t have to be stripped off and lay naked in the scales and he can sit on the magic chair that weighs him.
He weighed 13.6KG last time in November and now weighs 14.8KG. In Dr Robs words – he’s had a good feed this Christmas.
He is thriving.
Trachy children or children with respiratory problems often struggle with weight gain. NOT RORY!
Following this we had a bit of a wait until we were called in to see Dr Rob and so we did some playing. Rory really is a dream at times like this, he is no bother at all, happily wandering around the corridors and playing with the toys.
Rory’s name pinged up on the screen and off we toddled down the corridor. Mummy felt slightly nervous about the appointment because she had to tell Dr Rob that she had solely made the decision 8 weeks ago to stop all of Rorys medications that he had been on daily for over 2 years, based on her own observations of his behaviours and research that she had done herself into ways to restore neurological functions in children with developmental delay, social and communication disorders etc. She had been proved right so far because he had managed fine (or so it appeared) and when he had caught a cold he had got over it fine by himself and so he obviously didn’t need the medications anymore, or so Mum believed. She had hoped that Dr Rob would be ok with that and not cross.
Mummy hadn’t kept it a secret, she had shared this with nursery staff, Rory’s nurse, the health visiting team, his speech and language therapist and so if anyone had wanted to flag up some form of neglect from mums decision to stop giving Rory his medication, then everyone had their chance to do so. Most likely they knew that Mummy wouldn’t make that decision lightly and Mummy will openly admit that the first few weeks were very stressful for her, especially when he caught a cold, because she was carrying a huge weight on her shoulder having made that decision, hoping that his lungs and his chest were in fact ok and he didn’t need the medications any more.
The appointment went a little bit like this….
Dr Rob asked how we all were, the usual niceties before asking more seriously how Rory had been doing since November.
Mummy & Daddy explained that Rory had been better than they could ever have wished for. That considering the winter had been mild and there had been lots of bugs about, teamed with our first winter out and a winter in a nursery full of bugs, we had been absolutely fine. We discussed the one admission in September, but that since then, having caught the odd cold here and there, Rory had been just like any other child.
Dr Rob was pleased to hear that and sat back down to begin writing his notes. Mummy took a deep breath and said that she needed to be honest with him and that she hoped he wouldn’t be cross with her. He looked up. Mummy said that she had made the decision in january to stop all of his medications. Before Mummy could say anymore, Dr Rob said that he was ‘delighted’ and that it was ‘such a breath of fresh air to hear that’ and before Mum could explain any more, he went on to say that it is such a big huge scary decision to take children off their meds because you have no idea if it is those keeping them well or whether they are generally well and stronger now, and the only way to know is to stop the meds and see if they get poorly, and nobody wants to put their child in that vulnerable position. Yet Mummy did. She took that chance to help Rory to stand on his own two feet and to help restore neurological function and it paid off for her.
Dr Rob said that he respected Mummy for doing what she did and he asked her what made her decide to do that, so she shared the findings of her research. She explained that she had observed certain behaviours in Rory which concerned her, mostly around social and communication difficulties. She had put it down to lack of social interaction and having a trache for a while, along with being a little bit behind his peers for obvious reasons, but as time went on, she thought there may be something more and then she come across something called the Nemechek Protocol and she read up on it.
Basically, it is research around gut bacteria and a bacterial imbalance which effects neurological function and therefore displays in develomental delays such as social and communication and interaction disorders. The research listed 10 things which cause this bacterial imbalance in the gut, and Rory ticked 9 out of 10 of the boxes, two of them being his long term antibiotics and long term antihistamines and so she bought the book written by Dr Nemechek himself and she read it page to page, making notes, doing further research, speaking with parents around the globe who had taken part in this, monitoring other children’s participation in his protocol and their progress and wins.
Once she had decided that the research was valid, that it was reliable and that is was something she wanted to participate in, she stopped his medications. She didn’t tell anyone at first, and within a fortnight she couldn’t believe the difference. Daddy, Nannie & Grandad, Claire (Rory’s nurse) and the staff at nursery all commented on how different Rory had been. His eyes were no longer glazed over, he looked at you with real eye contact, instead of through you. He engaged with you and was no longer entirely in his own world. It made a HUGE difference. 4 weeks later Mummy ordered the alternative therapies / natural medicenes and began the protocol to balance his gut and restore his brain function to give us the best version of Rory that there can be.
He is doing amazing and hands down it was the right thing to do. This was all confirmed when Dr Rob examined Rory’s lungs and chest and told us that HIS CHEST IS CRYSTAL CLEAR and that Dr Rob gave us A GREEN LIGHT FOR RORYS TRACHY OUT from a respiratory perspective and that most likely once Rory’s tube is out there is no reason why he wouldn’t be discharged from the respiratory team.
Not bad for a once oxygen dependant, twice collapsed lung, trache child!
And with that we legged it out of the hospital and had snack in the car on the way home. Smiling all the way!
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