~ the worst kind of pain is when you are smiling to stop the tears from falling ~

So here I am, lay upside down on the ridiculously uncomfortable hospital camp bed (4th night in a row – plus 1 night on an equally uncomfortable camp bed in hull – we couldn’t stay in critical care) with the nurse station light spiking through the cubicle door giving me just enough light to see the unsettled Rory lay in his cot right next to me. I’m lay here with notepad and pen, iPad and iPhone…..inking my innermost thoughts and experiences over the past week and giving myself to yet another blog, because…well…it gets me through it. 

Since my last blog, Rory was prepared to be woken. The physiotherapist did some cardio physio with him, helping his heart and lungs get rid of secretions to give him the best chance of coming off of the ventilator and staying off. Daddy prepared to go through early to make sure he was there when Rory woke up. Or at least he tried…when he put the keys in the ignition the dashboard read ‘STOP. WATER’ so he proceeded to fill up with water and then as he went to close the car bonnet….we hit a problem. It wouldn’t close. Despite all problem solving efforts, I grabbed Austin and we drove daddy through to Sheffield. (Before I am inundated with offers to fix it from you lovely people…..a trip to line side and a small fortune later….it’s fixed). So…Rory was weaned from the sedation and woken up and then taken off the ventilator. He luckily didn’t require oxygen and looked to be doing quite well. Or at least well enough to be moved to a ward. 

Rory had other plans and was super unsettled so the iPad, iPhone, notepad and pen went away for the night….probably a good thing because I am in a much better state of mind today and the blog might read less ‘pity me’ and more ‘let’s do this’….

So….a consultant came to see Rory and spoke to us. They explained that the collapse was a grade 3 (75 – 99% collapse) grade 4 is a total collapse of airway, no means of life. Scary realisation of how serious this is set in….as if being sedated and ventilated for 5 days didn’t switch on that light already….I know. 

The consultant said that the first attempt hadn’t worked, the second had, but that the airway still wasn’t as wide as it should be. 

Once on the ward the nurse said that should he continue to be stable, once he remembers how to feed and make noise, he will be allowed to go home. Remembering those days in nicu when feeding took forever, I looked at my boy and gave him a little team talk. He could do this. Easy. So I asked the nurse for a bottle and he battered his allowance. He did it again and again. He is now battering 150ml when he is only expected to take about 70ml every 3 hours. (Seriously a good thing. Rory was the bigger twin before this happened, he has lost quite a bit and now Austin is visibly bigger and weighs a whole pound more). Home is in sight we thought. 

Please excuse that writing this almost a week later, I can’t remember the exact days of the following events.

The next conversation we had with the consultant informed us that as Rory had been given lots of steroids, he had to be weaned off them and monitored for 48 hours before he was able to go home. This took us to Friday or possibly Monday. Steroids reduce the swelling of the windpipe and so the possibility was that the swelling would come back and cause more problems once the steroids were stopped. For a moment I scoffed at the inconvenience (I know that sounds shallow) of being in almost another week, but then realised that it could always be worse.

Ironic really!

The next conversation with the consultant went a little bit like this…..

Consultant: I want you to have the lowest threshold possible for panic before bringing him in. This is not a broken arm or a temperature. This is a safe airway issue. It’s life or death. (Yes…she was THAT blunt).

Me: how likely is it that this will happen again?

Consultant: it’s nailed on. We will definitely do the same operation at least once more. Then there is the possibility of a tracheostomy.

Nurse: a Trachy is quite life changing. (Yeah….thanks for that)

Me: as he gets bigger will he grow out of this, will his windpipe get stronger.

Consultant: yes

Me: when? (Neither the consultant or specialist nurse could answer, nor give me a rough guide even though I begged for numbers and promised not to hold them to it)

So. Basically we are a sitting duck waiting for it to happen again and will be for years to come I guess. 

I have to say though that the specialist nurse has been AMAZING with me and Ash answering all of our questions. The funny thing is, we are rarely here together as we take it in turns, but yet our questions are, in the Drs words, consistent. High five to team work. 

The diagnosis for Rory is a subglottic stenosis. He also has a stridor. 

Subglottic stenosis is a congenital or acquired (it is believed Rorys is acquired) narrowing of the subglottic airway. Although it is relatively rare, it is the third most common congenital airway problem (after laryngomalacia and vocal cord paralysis). Subglottic stenosis can present as a life-threatening airway emergency. Acquired subglottic stenosis generally follows as an after-effect of airway intubation. (Rory was intubated at birth as he wasnt able to breathe on his own, Austin too).

Stridor (Latin for “creaking or grating noise”) is a high-pitched breath sound resulting from turbulent air flow in the larynx or lower in the bronchial tree. Stridor is a physical sign which is caused by a narrowed or obstructed airway. 

So…the next conversation, the consultant said we need to stay until Tuesday at least when the lady who operated is back from Greece and can make a decision. She may want to put a camera down, or perform the operation again anyway (because the stridor came back day two off of the steroids) and so, and I quote….we are not out of the woods yet. 

And so the bad day began. I  had my twice daily fight and packed up the camp bed, settled Rory and made my way to the parents shower room. It was engaged. I stood and waited and then this overwhelming thought came over me….what if it happened, right now……and I hurried back to check. Is this what life is going to become? Just a sitting duck waiting for it to happen again, could be a week, a month, a year. It was all too much. I cried all the way to the cafe, sobbed into my tea and sobbed all the way back to Rory. It was one of those days where I just didn’t think I could make it through the day. Everyone’s allowed a bad day right? 

Funny thing is the chaplain visited again, she had been a few times before to chat with ash about christening the boys and things, and asked how we were doing. The smile stopped the tears from rolling and I spoke about how we are an amazing team, there are always people worse off, that as long as the boys are OK in the end, we will get through everything that is thrown at us, that the only thing is, as shallow as it sounds, it’s the inconvenience of being a single parent, taking it in turn with the twins, swapping in the car park, routines out of the window, all when we had got ourselves sorted in our 3 weeks at home, and we were making life look easy. The chaplain turned to ash and said ‘where did you find her, you have a good one, I wish all parents had such a positive outlook’ no sooner had she walked out of the door that I turned to ash and said ‘don’t ask me where that rubbish (polite version) came from’. It was a far cry from the self pitying wreck I was 5 minutes before. 

Dads bad day was yesterday. He was beating himself up because he was tired and felt like he wasn’t giving his best. He felt like Beau was getting a raw deal, even though her routine hadn’t changed much. She has gone to the caravan for the weekend with Nannie and grandad. He felt like Austin was missing out because his life consisted of visiting his brother in hospital, being watched by Nannie, grandad, auntie Vicky, auntie Chloe or auntie Mandy whilst mummy drives to Sheffield to swap with daddy and daddy drives back. Daddy felt sad that the boys are missing out and that they have been through enough, he was anxious about returning to work when the situation is overwhelming enough with us both off work, never mind when daddy is back in September. He just had a bad day.

Today when I went for breakfast, I saw a lady sat crying into her tea, I couldn’t help but reach out to ask if she was ok, I told her that I was sad yesterday and that I’m sure tomorrow will be a better day. I wanted to punch myself for saying it as I wandered off back to the ward.

In other news the nurse came to take bloods for Austin but the sample was inconclusive. A different nurse is coming tomorrow. We were supposed to be meeting the health visitors today. Ash says, and I agree, there are just far too many professionals involved. Overwhelming with phone calls, hospital appointments, visitors. It’s obviously for the best for the boys but in some ways it’s like they don’t belong to us…….I suppose it’s like they never really have. 130 days old and only 18 days at home, that’s 77% of their life in hospital. With someone else over ruling your parenting, Sad really. 

So…..I’ve possibly forgotten lots, like Nannie and grandad taking Austin out to the ponds, how much the boys are missing each other, the time mummy was starving in hospital……but here are some pictures…..

One Reply to “~ the worst kind of pain is when you are smiling to stop the tears from falling ~”

  1. I just wanted to say that Sarah,Frances and I like everyone else sends our love and thoughts to you all. You are such brilliant, dedicated parents. Xxxxx

    Liked by 1 person

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