So here I am, more than 12 hours later, with a ginormous migraine, a cup of tea and a sense of relief that after holding it inside my head, all day, I can finally write this blog, about this mornings emergency. So here it is – much needed Mum Therapy!
Our usual routine was out of sync this morning, both boys slept in until 6:45 and so our morning rush was a little more rushed, never the less we waved Ash out of the door at 7:30am, whilst I continued the morning struggle of dressing both boys whilst they run around the play room half dressed, swapping clothes and giggling.
Its a running joke in our house that I never manage a cup of tea unless another adult visits, or Ash is home. So it was no surprise that my morning cuppa had gone cold by the time I sat down to drink it after making sure everyone was dressed, breakfast pots washed and the house in order ready to start the day. Ironically today, I microwaved my cuppa in the hope of sitting with it and watching the boys playing so nicely in their tipi, only no sooner had I placed the newly heated cup of tea on the dresser side, that I saw Austin reach for Rory’s trachy, i launched myself at the tipi screaming ‘NOOOO’ (I cannot help but be dramatic, the anxiety levels of him pulling it out are beyond measure and obviously prevention is much better than attempting to get it back in) and between Austin going for the tube and Rory flapping his arms about to protect himself, the trachy was out. That’s right. I was home alone, with both boys, and the trachy WAS OUT!!
(And the cup of tea was left on the side to go cold)
Every single time this happens (until today we have had 7 emergency trachy changes) I am filled with fear, panic, anxiety and I have to talk myself down, especially today, when there was literally nobody else to help and there wasn’t time to fanny around ringing for help, I needed that trachy tube in Rorys neck as a matter of urgency, and that was that!
Except it wasn’t!
I scooped Rory up in my arms, he was crying, distressed, I’d like to think it was because the trachy tube was still tied around his neck but because the tube was out, it was tighter and digging into his stoma site (hole) and so I held him with one arm and with my other arm, I flapped around in a panic trying to get the rucksack which we carry all of the emergency equipment in.
I climbed over the baby gate, baby and bag in hand and I sat down on the kitchen floor. It felt safe here because I was away from Beau and Austin, yet I could see them through the gate. I lay Rory across my folded legs, so his bottom sit between my legs and his back arched over my thigh, the correct position for his airway. Completely winging it, I set up (with one hand) whilst trying to pacify Rory with the other, a new trachy tube, a smaller tube in case I couldn’t secure him a safe airway, the ambu-bag for resuscitation, lubrication jelly and scissors. As I hadn’t got another spare hand and panic had set in a little, I literally grabbed the bag and left the suction machine and catheters in the playroom (the other side of the baby gate).
By this point, which was probably less than a minute, Austin and Beau are stood at the baby gate whinging at me, they sense it don’t they, so I began rolling an escapee ball pool ball (the only thing in reach) towards them for entertainment, and they rolled it back, so alongside trying to keep them occupied and stop them distracting Rory who was still really distressed, I found myself attempting to be calm (absolutely flying off the handle inside) and sang ‘he’s got the whole world, in his hands’ Our wedding song from Church, a school assembly favourite of mine, that I sing to the boys every night / nap time, to try and calm the atmosphere.
(Ironically my current cup of tea has gone cold because I’m too engrossed in blog-therapy)
I snipped the tape to free the trachy from around his neck, trying my best not to snip his skin because I was physically shaking. He is crying (out loud, because his tube is out) and his stoma site is opening and closing as he breathes, faster each time. In literally seconds, I got the new trachy tube in and pulled out the metal inserter. The relief that it is in when you feel the breath come down the tube is a feeling only a trachy carer can describe. However, thats not the end of it, you have to be able to hold the trachy tube in place with your fingers whilst passing the tape under his neck and tying it in a bow with one hand. Yes. ONE. HAND!
Now, i’ve done this before. many many times, (Rory usually lays still) only Rory had decided to do a poo mid-way through this ‘my trachy is out’ distress, which means he was equally as unhappy about his need for a nappy change as he was about a trachy change. I couldn’t do anything about it because it wasn’t my priority, until the trachy was in place and his airway was safe. However, because of how ‘doubly’ unhappy he was about the whole situation, he was flapping his arms around and chucking himself all over the place in a paddy, resulting in him pulling out his new trachy, mid-way through my attempt to tie it in place, and throw it across the kitchen floor.
Side note: The first thing to do after a secure trachy change is suction, to get the lubrication jelly out. The machine and catheters were in the other room and I didn’t manage to get the tapes tied to do this bit, before he pulled it out again.
So then I am placed with another Dilemma. I should put a new / sterile tube in place each time. However, I only have two. The one he pulled out from his neck, and the other which was sterile, but has also been in his neck and now thrown across the kitchen floor. Time was of the essence, the tube needed to be in his neck NOW!! What did I do? I just had to pick up the tube and go again, except he repeated this whole paddy, pulled it out AGAIN. And he repeated it TWICE MORE! And at no point was I able to suction the lubrication jelly out and it was probably filling his lungs like those slime baths the kids are going crazy for these days! The frustration verses the dyer need to stay calm, the frantic need to hold that tube in place against his strength during each and every paddy, whilst trying not to be too brutal. The pressure to get it in safely – IMMENSE! So 4 tube change attempts later, I managed to get the tube in and tie the tapes – in a fashion. (All the time i’m singing and rolling the ball back and forth to entertain Austin and Beau). The tube was finally in place, I still had to watch he didn’t pull his tube as the tapes weren’t 100% safe, but I was in a position where I could call for help. I knew Ash would be pretty much at work in Sheffield by now, so I rang my Dad who would still be at home and I can’t even remember what ‘brave-faced’ mumble jumble of words I said, but he knew and he cut me off mid-sentence and said he was on his way.
Knowing Dad was on his way, I rang Ash, who was almost at work, Ash usually gets the raw Kelly, not the ‘brave-face’ and as soon as I said ‘he’s pulled his trachy out, 4 times, i’m on my own, it’s in, dads coming’ (we learnt in an emergency to be succinct and factual – a bit like when you watch casualty) he replied with ‘are you ok? Do you need me to come?’ I just broke down. Sobbed like a baby. Rory in my arms with half a safe airway, Austin and Beau at the gate waiting for the little blue ball to roll back in their direction, within seconds, I wiped my tears, told Ash I was ok and i’d text him when everything was done and we were all safe.
Dad arrived shortly after (this whole thing lasted 30 minutes at the most) and found me (brave-faced) on the kitchen floor with medical equipment strewn all over, Austin & Beau running wild with excitement at Grandads arrival, and helped me to calm Rory and get his tapes secured, clean stoma pad in place and clear airway after Grandad kindly passed over the suction machine and catheters. It wasn’t easy, even Grandad was surprised at Rory’s distress. Grandad held Rorys arms to keep the tube safe whilst I changed his nappy, one less issue for him to deal with, and then I attempted to secure the trachy properly, except, because he had in effect had 4 tube changes within 20 minutes, he was feeling a little vulnerable and fragile and wouldn’t let me touch it, so we ended up with Grandad holding my phone whilse playing peppa pig on youtube, to divert his attention whilst I secure the tapes.
We got there in the end.
I cannot find the words to do justice for how it feels to hold your childs airway in your hands. To be solely responsible for his airway 90% of the time. Even when I am sleeping, I am responsible for keeping his airway clear, because like you and me, and normal children, he doesn’t have the innate ability to do that, like most of us are born with. Being a parent is tough, being a carer equally as tough. I sometimes have to give myself a reality check and remind myself that I carry alot on my shoulders – im not talking about the rucksack of medical equipment that comes everywhere with us – being parent/carer to twins with complex medical issues is a big deal. We have managed 18 months without accepting help from social car e, without having carers in, respite care, short breaks. We wanted to do it ourself, on days like today I ponder how different life would be had we got all of the extra help, but I also feel proud that we are soldiering on and we are able to cope with episodes like this, with resilience, with coping mechanisms, with the ability to just carry on.
Grandad went to work (having his first cuppa of the day at dinnertime) and carried on.
Daddy went to work (filled with worry and anxiety until he received the text from me saying the trachy was secure and everything was ok) and carried on.
I, once making sure Rory was ok, continued with the day, made it out of the house to collect a parcel from Cortonwood, took the boys for some dinner, and made it to the hospital for a routine appointment with the respiratory consultant who was delighted to see how well Rory was doing as he ran around the hospital shouting (not bad for a trachy child who shouldn’t make noise) reminding us that despite all of this, we have two boys who despite all odds, are here, are doing better than anyone expected, and are going to going to pick up every challenge thrown at them, chew it up, spit it out and stamp their name all over it.
And that, that is why I carry on. If those little 2 pound 26 week prems can manage everything that has been thrown at them, then I sure as hell should be able to.
Luckiest woman alive me!