I suspect my face as I write this is a weird mix of frustration, annoyance and anxiousness, topped up with a touch of fear. So poo emoji then? Head exploding? Tearful? Face palm? Or all of the above?
Last month Nate had another of his ”funny” turns. It was just before school while waited for the taxi. He was fast asleep, still on his BIPAP. I pottered around tidying, shouting at the dog as I nearly fell over him, and then into Nate’s room with his wheelchair, ready to to put on his AFOs and shoes, and hoist him into his chair. Nate was in a very deep sleep, his heart rate had dropped to the high 50s- something it does, and something that can be the only warning we have that Nate may have a dodgy episode. His oxygen sats alarm started blaring and at the time I thought that it was a nuisance alarm due to my battle getting Nate’s right foot in his AFO. However it didn't stop, and when I looked at the monitor the oxygen readings were 62 and still dropping. The trace on the screen was perfect- meaning it was an accurate reading. I gave Nate a prod, a wiggle and a shout to try and bring him around and reached for his emergency meds. By this time his oxygen sats were at 32 and he was what can be best described as a similar colour to Veruca Salt when she's ”gone a bit blueberry” in Charlie and the Chocolate Factory. The batplan from the hospital (formulated in clinical surroundings) was to try and avoid using the NPA and instead give midazolam and change the programme on his ventilator to a new untested emergency setting” to see if that would ”work” without having to use the airway. A blue child and horrendous sats in your own home when you're alone kind of limits what you manage to do. I think I went on autopilot and subconsciously selected what I thought had the best chance of success based on previous experience. So I gave midazolam, which didn't seem to work very quickly (but with the amount of secretions in his mouth I’m not sure how much was absorbed), used the NPA, put his ventilator back on to breathe for him, and rang 999. Nate’s sats gradually started to increase while I dialed the operator and my voice broke as I gave her all the information she needed. Thank you lovely lady. That phone call never seems to get easier. By the time the paramedics arrived Nate was asleep and doing ok. Me not so much. We transferred to hospital and stayed until he woke from the midazolam and once it was established he we clearly absolutely fine we went home.
In A and E I was met by a barrage of questions, many I simply couldn't answer. By myself I had no idea how long things had gone on for and truthfully I think I was in a little bit of shock. What I did know, however, was that this was the longest episode Nate has ever had. It was the first daytime episode and also it had happened not long before he should have been in the taxi going to school.
Transporting Nate to school safely then became a problem. Neither myself nor Michael could drive and watch him adequately and local authority transport could not provide anyone to manage these medical needs. Their escorts are just someone to sit with our children not intervene as we would need them to do. For the last month we have relied on the support of Nate’s school and family to get him there. Running ourselves ragged in the process. Transport passed us over to continuing care who would look to increase our personal budget at panel but we would still need to find people to go on the taxi with him as our care agency couldn't provide such a role. Our local authority will provide transport for Nate but not keep him safe on it... It doesn't make any sense. Suggestions from health and social care were to recruit to the role, but I think that unless you already know someone suitable then identifying and employing someone appropriate for a few hours a day is quite tricky, and that's another pressure on us. Added to the number of phone calls and emails we've both been making. Luckily family and friends have stepped in and are now trained and able to travel with Nate, but they really they shouldn't have to. Nate’s new emergency care plan will now detail a plan for if Nate isn't on his ventilator when an episode happens- midazolam, bag and mask with oxygen. So we have finally made some progress after chasing people for the last few weeks. I have to say that all health professionals involved have been helpful and supportive, as has our new social worker, but even so everything takes so long.
Six more weeks until the end of term and then a rest.
Well as much rest as you get with an almost teenager and a fantastic but medically complex young man.
So if you've seen me lately I will have either rambled on to you about utter shit, or actively avoided any conversation at all. Apologies for that.
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