A batplan

I met this week with the team who know my son best. There was no mention of the “T” word, and I left feeling less like a neurotic parent with unrealistic expectations than I had done the previous week. 

It was clear that my son’s respiratory consultant was prepared and willing to assist in any training needs, and wanted to support us in any way he could. We trust him. He’s told us some terrible things over the years, and is always ecstatic to be proved wrong. The team acknowledge that Nate does his own thing. He has never responded in expected ways that follow the “norm” and they accept that. They have always been willing to think outside of the box, which is exactly what we need. 

So if we think about the plan itself (which is being written up)

- Nate is getting a new ventilator that will have an additional “emergency” setting with increased pressures that his consultant feels  positive will be able to ventilate him during these scary blue episodes. 

- We will administer 5mg of midazolam and call an ambulance 

- We will use an NPA if necessary 

We hope this will be sufficient to keep alive. He will not return to respite until it can be shown that the emergency pressures and/ or midazolam are enough. 

What I took from the meeting is that my concerns about midazolam were sensible, and that my expectations that people would be trained to use an NPA, were, in fact, reasonable. Midazolam could cause Nate’s respiratory system to struggle but this would be something that we wouldn’t know until another event takes place. We could do a “test” and administer the drug under controlled conditions in hospital while my son was asleep, but that wouldn’t accurately replicate an event while he was in spasm in an extremely deep sleep. Therefore I agreed to wait for the next event at home and treat accordingly. 

“ Did you think you would lose him” my son’s consultant asked. “ BLEUGH” said my brain as it pretended he hadn’t said anything at all. 

Can open, worms everywhere

So we had our care team meeting today. Good turn out actually which was appreciated. I’m pretty sure my voice only wobbled the once- a massive fucking achievement if I’m honest. 

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...  

Out of the blue

We saw the new year in subdued and quiet. The wine was put down and the false smiles were stuck firmly to our faces. Nate was in bed early after a busy day and went into a very deep sleep, which was reflected by a heart rate in the 50s. A few hours later and his oxygen saturations started to drop. The alarms are set to beep aggressively at 85% and it’s at that point we entered his room. But the numbers just kept falling. We tried to wake him, prodding and poking at his podgy chest but he was stiff, legs stretched out and arms clutched tightly to his chest. So tight is the spasm or seizure that no air can enter his body, even pushed through by his ventilator.  We can’t open his jaw and airway as everything is clamped shut. The last time this happened ( which was a long time ago now, a year or two at least) we were given an ambubag, a nasopharyngeal airway ( NPA) and midazolam. All things to try with no guarantee of success. At 49% oxygen saturations I placed the NPA and the ventilator could to do its work- breathing for him for as long as the event lasted. This was the first time we had used the airway with Nate and in such severe spasm both his drs and ourselves were unsure if we could get it in. But we did, and it worked, and so needs to be part of Nate’s emergency plan... but here we hit a hurdle... Nate’s current respite placement are not prepared to use the NPA. Yes the midazolam may work too, but in a child with crappy breathing a rescue dose might end the episode but compromise his breathing and lead to the need to use an NPA anyway. Yes they (and we) would also call an ambulance, but how quickly would they get there? These events are few and far between but clearly they are still a huge risk to Nate. 

This also poses a greater issue than the potential loss of respite. If the provider will not allow non healthcare staff to use a bendy plastic tube in an emergency situation then my son cannot live within the varied services that it provides. I can’t bring myself to think very far ahead with Nate but I always considered his respite provider as our “back up” should anything happen to us. He was settled and had staff who knew him well. If one or both of us had an accident or became ill (or simply could no longer cope) I saw them as a route of support more than a few days respite per month. But my plan has snagged on a massive scale. Where now can care for Nate? We are due meet with everyone concerned with Nate’s care next week but unless an alternative life saving measure can be thought of, or they change their mind of course, he won’t be able to return to respite. I’m waiting for his paediatrician to return my call in the hope she will have something helpful to suggest. 

I feel so sad about it. It was a long process to change respite when you consider assessment, funding, recruitment, training, and getting to know my son. Nate loves going. It’s a bright and lively place. But the “medical stuff” was always going to be the tricky bit in the placement. If it ends, as I think it will, I have no hard feelings. I could shout and stamp a bit. I could push for them to use the device. But do I really want to put Nate’s life in the hands of people who do not want that responsibility? They were clear from the offset about not being a medical establishment and that should Nate’s needs change they might be unable to continue with their provision for him, but what options are there for the more “medical” kids and young people? 

Not many 

Although we are now capable of keeping some of our most medically vulnerable young people alive longer and with a good quality of life, community services and our society itself has yet to catch up. Schools struggle to cater for severe medical needs, hospices have strict criteria, and other respite provisions have medical lines they will not cross. Many residential services lack experience, young adults in their own homes see a huge turnover of staff and the problems that brings with it. Then there’s the OTs and physios and social workers with huge case loads. The vague or top secret criteria. The not offering help until you are broken. The lies by omission. The guarded pots of insufficient funds. 

Our young people have value, they have worth. They should have options.