The next chapter…

The next chapter of our life, much better written by me than Austin and Rory, in their eyes they go to this great place with other kids where they can paint and play in the water and have lots of fun outside, simple as that! They don’t appreciate the depths of it all!

So. As hard as it was to send Austin to nursery in April on his own, and it really was one of the hardest decisions I have ever made in my life, it proved to be the best decision in the end because Austin is growing into an absolute gem of a little boy and he really loves his time at nursery.

In the background, from April to now, I have been working hard to fight for Rory’s opportunity to access nursery the same. It has been far from straight forward. The support from nursery has been great, but co-ordinating nursery, the community nursing team, the continuing care commissioning team and the care agency and nurse carer, has been a task, especially when squeezing into my already hectic day to day. And it really has relied upon me to pull everything together so i dread to think how anyone without my persistence and organisational skills would get on.

In short – We originally had an assessment and were granted funding for the nurse 1:1 that Rory needs to care for his airway whilst he is at nursery. They then put Rory’s care package out to tender and a care agency took it on, who then had to find 3 carers either already trachy trained or willing to train up. They like to have 3 so that one can be the main carer, another fill in around availability and to ensure Rory doesn’t get attached to just one person, and a third to cover for sickness and holidays. Now here was the problem, I would much rather stay at nursery and keep him safe than let someone care for him who isn’t experienced, and unfortunately the care agency planned on matching us with carers who had little experience of a child like Rory. Everyone however, does understand that the role of his 1:1 is literally to keep him alive in my absence, and believe me, it is not a responsibility to be taken lightly.

Aside from all of this going on, emails and phone calls and meetings to and fro, i became aware of a nurse carer who is relatively local to us, is not only doing a Masters in Paediatric Nursing but who has worked with a little boy with a tracheostomy for a good few years in nursery. I knew instantly that I needed her in our life and there were no limits to the lengths I would go to, to make it happen.

We had some mutual friends, and we were introduced and we chatted about possibilities and from here I went down the proper channels, between the CCN, the care agency and nursery and eventually, it was confirmed that Claire (super awesome, we love her already) would be Rory’s special friend in nursery whilst she was available around her studies.

I put together a plan that stated Claire would be the ONLY 1:1 for Rory in the first instance and i would fill in where she wasn’t available, and then once I was comfortable with Claire, I would look at having another carer trained up on rory to care for him on the days claire wasn’t available but that I was not leaving nursery unless I was 100% happy. And so it was going to be a long process. So for all those people thinking ‘ooooh what are you going to do with those 3 hours a day you have spare from September’ well, I won’t have them spare at all, I will probably still be chasing my two around nursery, and in honesty, that will be when they are well enough to attend and not at home being suctioned around the clock in a sleep deprived state of despair!

So, we booked for Claire to attend the holiday clubs alongside me, to get to know Rory and build their relationship and then I have to train up two staff members in nursery (even though I already did the INSET day) and then when I am happy, I can leave nursery and feel confident that Rory is safe and that they will gain so much from their pre-school experience and being without me, who they have had 24 hours a day, pretty much every day.

With my teacher head on, I made Rory a 1-page profile to be displayed above his peg, in the office, around nursery so that any new staff, visitors, volunteers are aware of his needs. I asked that he have a designated peg so that everyone knows where to find his rucksack and medical equipment, I bought him a box to store spare equipment at nursery so that everyone always knows where to find things. I also bought a drying octopus because with the water tray and paint etc, his bibs get wet very quickly and then he becomes very labour intensive on suctioning, and so we can hang the bibs up and they will dry and we can always have a stock of bibs to keep changing them.

So much to think about.

There were 5 holiday sessions on offer and I booked A&R into all 5. I felt it best to keep some routine so that in September, we don’t have the added stress of Austin not wanting to stay like we had at the beginning. I also thought it would be a good time for staff to get to know Rory and his needs in a quieter environment and for Rory to get used to it, but also to the germs and environment a little before it is full on germy in september. Ironically, the two staff members working the holiday club are A&R’s key workers, so it is a great opportunity for us to get to know them and them to get to know us, and Claire of course.

I did the first two holiday clubs on my own as Rory’s 1:1. It was hard work, chasing him round, pre-empting his actions to remove the risks and prevent harm. There are so many of them and he is obsessed with the water tray, probably because he knows he shouldnt play in it.

On Claires first day, I was really nervous, not necessarily for the fact that it was Claire’s first day but because another lady from the care agency was also coming to do a risk assessment and there was a lot of important things to consider, when I knew I would barely be able to concentrate or hold conversation for chasing Rory around nursery cupping my hand over his tube to prevent death by water tray, or sand pit, or paint water, or open cup….

It turned out fine. We arrived at nursery at the same time as Claire and she came straight over to help us get out of the car and go into nursery, instantly I was at ease, I just knew this lady was going to become part of our family and we were going to benefit from her in our lives a ridiculous amount! We didn’t really last very long at nursery, in fact Rory was asleep by 10:45am! our session was  9 – 12! In that time though, Claire got stuck in and suctioned him a couple of times, she played with him in the water tray and even told him off a few times, which I liked a lot. we cannot wait to get to know her and really don’t feel that it will be long before I trust her enough with Rory for me to leave him at nursery with her!

So whats the plan;

  • Claire to attend nursery the remaining 3 holiday sessions
  • I train up two staff members to a point where I feel they could keep Rory alive if Claire was to pass out for example.
  • Claire to do a trachy tube change with me.
  • Attend nursery with Rory from september and once I am confident with Claire and all of the above is done, I can leave Rory in nursery with Claire.
  • Once everything is settled, search for a second carer and start the whole process again training up, and then repeat for a third carer, and then hopefully, before the academic year is out, I will be able to leave Austin and Rory in nursery, have some time for myself and let them grow and flourish and make the most of the opportunity.

Oh…..and we need to buy more uniform because the one set I bought them fits perfectly and they are THAT cute, it actually hurts every time I look at them in it!

There were so, so, so many times I didn’t think we would make it this far, I never dared to believe my babies would live this long, never mind be wearing uniform to attend a mainstream educational setting.

Proudest, most emotional mum in the world!

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