I didn’t sleep very well last night as I had a really odd dream that involved fluid on my lungs which I couldn’t cough up but could see through special glasses. Best not over analyse that I suppose...
To give a brief summary of the meeting:
- We will look at alternatives to using an NPA, however the airway may remain part of Nate’s emergency plan.
- Nate really needs to have another “episode” to establish whether or not the alternative plan works
- If a non NPA plan is successful Nate will be able to return to his current respite placement
- In the meantime we will explore a return to the hospice, however said hospice now has a waiting list so this will take some time and there’s no guarantee we will feel happy for him to return there.
- We will look at booking in more overnight care ( we have a personal budget and so long as the care agency has capacity we will book in more care).
- The personal budget amount will not be altered until the situation has been resolved.
One unexpected outcome of the discussion was the query around his education. No one in school is able ( allowed) to put in an NPA and so this throws up questions around keeping him safe in school. Luckily we had several sensible voices present who complied a flow chart/ action plan which could be implemented once signed off by medics enabling Nate’s educational placement to continue. I’m not going to lie, I wasn’t expecting that massive spanner in the works. Can open, worms everywhere.
I still don’t “get” the issue with NPAs, but I can see from my fellow SN parents of medical children that similar issues are nationwide and actually we have it “good” (relatively speaking).
So we are now without respite.
I would like to thank everyone for the supportive messages to my previous post, and send my own support to those managing without respite because they don’t trust anyone with their child, or who haven’t any due to not meeting the picky criteria to qualify for it. What I don’t appreciate is comments along the lines of that they would never consider putting their child in someone else’s care and they certainly wouldn’t in my position, or we should consider ourselves lucky to have qualified for respite in the first place. This isn’t a fucking game of who has things worse, also hospice respite criteria isn’t one you want to meet. I absolutely support my fellow SN parents who are going through shit. If you don’t need or want respite that’s ok. If you don’t qualify for help that’s fucking shit- let me know if I can help. As you all know I do enjoy a radgy email or social media tirade. But please do not judge me for the want and need for it. If I’m honest I had a complete breakdown in 2012. I left my job to care for Nate, we lost our house and car, and we declared bankruptcy. Nate was in and out of hospital and really quite ill. Respite helped us fight our way back from the brink. I will absolutely talk about what we have been through as a family as it’s all part of who we are, and where we are today. My son’s medical needs to us seem day to day, and to be fair I am quite blasé about it all, but as his paediatrician does point out frequently we do well keeping him alive and well.
Without respite I worry I will burn out. Or Michael will. Or we both will.
Without alternatives to using an NPA that we know will work and won’t cause respiratory problems (or do cause respiratory problems but are managable and don’t require an NPA) we are left without any options of who could care for Nate.
We can never get ill. We can never die. It’s back to never travelling together like the US president and VP I suppose...
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