🎧 Just keep breathing and breathing and breathing 🎡

When we wrote our last blog on 26th September, we had spent two days at home and not at nursery because nursery had a sickness bug and Mummy kept us home to avoid us catching it.

Yes! We know! This is our first normal winter, isn’t the whole point that we aren’t hiding from bugs any more? Whilst that much is true, sickness bugs don’t offer us anything in form of increased immunity and so actually, there is not point us catching it (which we will because of our underdeveloped immunity) and then risking Rory and his solo kidney becoming dehydrated, Mummy or Daddy catching it and then us getting in a big mess! Why would we choose this? It was a difficult call for mummy to make and thankfully Auntie Mandy helped Mummy to make a decision because everyone else sits on the fence. Mummy doesn’t want us to miss out on nursery, because we have missed out on so much already, but what is the point of going, and catching something and missing nursery anyway, and putting ourselves at risk. So, we didn’t go! We did lots of playing at home, in the garden, at the park, with Claire, Rory’s nurse.

On the evening of the 26th, just after mummy published our last blog, and took a picture of us sleeping, Rory began coughing and needed suctioning and that was pretty much it for the rest of the night. lots and lots of suction and not much sleep. This was the start!

To be honest, the week ahead is a bit of a blur. Austin has had a cold for a couple of weeks, mild, but with an awful chesty cough, but he coped well, (aside from the odd nights where he was very snotty and slept upright on mummys chest, whilst she sat up in bed, with her chest covered in vicks vapour relief) and Mummy and Daddy had felt a little under the weather, so it is no surprise, especially with new nursery bugs and this being our first winter, that we were catapulted back to the early days of pulling all nighters, and ending up with our first hospital admission in 18 months!!

Mummy and Daddy were exhausted, they had returned to the 4 hour shifts with mummy sleeping 10 – 2am and Daddy sleeping 2 – 6am. On such little sleep Daddy had to go to work still, and Mummy had to look after us, with a poorly Rory requiring suction every couple of minutes, when she had been awake since 2am on only 4 hours sleep. On one occasion she had been awake more than 24 hours before she could get any sleep. She even considered sleeping in the car on nap time. But instead resorted back to chocolate binges from the garage on nap time and fast food. This always happens too, because Mummy or Daddy are always on shift with Rory, and they are so exhausted that takeaways are the way of life, when really, all everyone needs it proper food, to keep their strength up!

Suctioning was labour intensive, during the day and night, no sooner had you suctioned him, before even putting the used catheter back in the packet to dispose, he had coughed and needed suctioning again. It was also difficult to know if he was coughing to clear his tube of secretions, or whether he had a cough, and because he coughed, he was coughing up secretions and so you couldn’t really treat it either. Rory seemed ok in himself, but when Rory has a cold it is hard on the adults, and thats why lots of trachy children have carers at night, so parents can get rest, and don’t have to do the 4 hour sleep shifts that we do.

Even on nap time, mummy would drive for 30 seconds and have to pull over to suction, every time she would pull over, Austin would wake up, and so it wasn’t easy and yet everyone was so tired and just wanted a rest! Mummy wondered if she could nap behind her sunglasses!!

Rory’s breathing had gotten really fast, he was struggling for every breath and his oxygen saturations were low. Mummy and Daddy knew that they needed to take him to hopsital but they really didn’t want to because he would be wide open to catching lots and lots of other things. Also, it would mean that he wasn’t doing so well, wasn’t able to say he had done 18months without an admission. Eventually, Mummy decided that they should go. The worry was eating her alive, she couldn’t manage it herself any more.

No sooner had we walked into A&E at the childrens, than we were admitted and given a nebuliser with oxygen, back to back, to support his breathing. In fact, the amount of drugs made him sick. So they eased off, did them hourly and explained that he would need to cope spacing them by the hour, then two hour, three hour and four hour before allowed home.

At his worst, he was completely asleep, yet actually awake, just lay with his eyes closed, working so hard with breathing that he was shattered, yet too agitated to stay awake. He couldn’t be bothered with anything. His heart rate was high, he kept having tachycardia episodes, he was constantly coughing, constantly needing suction (we have gone through 800+ catheters in less than 7 days) and we were also getting blood up his tube.

Eventually the meds took control and he started to eat things. We were moved to a ward for the night and we made a friend. The little boy was so kind and caring, our TV wasn’t working, so he put Peppa on his without even mentioning it, and shared with Rory. He helped count out medicines, found age-related toys and shared his stickers. He found a jigsaw but Mummy said it was too hard for Rory, and so he and Mummy helped Rory to do it. It was great, the little boys mum helped too, and she didn’t speak much english, but it just showed you, between 4 of us, we had a little boy who was non-verbal, a lady with very little english and we all had so much fun. Language doesn’t have to be a barrier. In the night Rory was sick again and the little boys mummy ran over and helped, including emptying the contents of her bag into a cupboard to give mummy a bag for the sicky clothes. Mummy felt that this should be recognsied and wrote to the HeadTeacher at the little boys school, explained how well he conducted himself outside of school, showing respect and thought for others, and that he should have a special mention and the Head wrote back and said that they would make sure he was awarded for his actions.

The on-call Dr was one of the respiratory Drs, could not have asked for more, they knew Rory, we knew them….Mummy had banter with him because he was 40 minutes late and because he was 40 minutes late, Rory’s medicine was 40 minutes late and so he lost almost an hour, which, when you are racing against time to get home, and hours are important when weaning off my the hour, together, they struck a deal. It was 8PM and Rory had managed 2 hours 40 minutes. which was technically 3 hours, so he had almost skipped a step by default because the Dr was late, so the deal was that if by midnight Rory was coping, we could be discharged. Mummy asked him to write up everything and get everything ready for discharge and then we wouldn’t be waiting around.

Long story short, besides from being sick in this time, I fell fast asleep, everything was under control with the meds and at midnight, a Dr who had taken over from the respiratory Dr when his shift finished at 10, came to review and discharge Rory. When she arrived, we knew her too. She looked after Rory in NICU Jessops in the early days, she was the Dr that gave him accidental overdose, she was the one that took us into the relatives room and we feared the worse, and so were actually relieved that it was what it was! Anyway….turns out, she has since had her own twins, remembered Rory and Mummy straight away and they had a chat and eventually, in a surgical gown and hospital blanket, because all of my clothes and my spare clothes were covered in sick, Mummy carried me through hospital, looking like she had stolen me, in the early hours, to Uncle Craig and Uncle Calum, because they had collected a car seat (like a ninja from under the window where daddy left it so that they didn’t make Beau bark and wake Austin) and driven through to Sheffield to collect us.

We finally made it home, for another night of suctioning and no sleep for the grown ups, but at home, where there are less germs and we were all back together.

Following days were equally as difficult as meds were administered every 2 hours, so even though mummy, daddy and Rory decided to sleep in their bed, as opposed to staying up all night, they had to set their alarms for the medicines, and so didn’t get much sleep and it was very fragmented with all the get ups.

Rory slept all day because he was just shattered from breathing.

He heard that sunshine makes you feel better…

We had the decorator in at home, so had to spend two days at nannies and mummy was at the dentist, so we had an afternoon with daddy too.

Rory wanted to go to work with grandad, he had his toolbox ready…

Because we were still not 100% and the weather was pants, we fed the ducks from the car…Rory ate the bread again!

We played hide and seek…

We found Gaston and looked at him in our microscope cup…

and Austin took a picture on Daddys phone….of his foot!

Today, was our first day back at nursery. Mummy wondered whether she should spend her precious two hours sleeping, or treating herself to a shower. Instead, she went to the post office, did some shopping, stripped all 3 beds, washed them and pegged them out, cleaned the house from top to bottom, made a lasagne for tea and managed a shower. All within two hours! Then Mummy had headache and wished she had just at least had 5 minutes for herself!

There is always tomorrow!

3 Replies to “🎧 Just keep breathing and breathing and breathing 🎡”

  1. Tears in my eyes reading this you are all incredible and amazing Everything crossed for better health and sleep for all of you xx


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