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.