Roadtrip Disaster 2!

We should have known the whole adventure was going to go wrong when we had gone completely the wrong way, and added 30 minutes to our journey on the way there.

We packed everything up in the morning, Mummy specifically telling Daddy to pack light with none of his usual ‘just in case’ outfits and off we went, with a quick stop at the pharmacy to pick up saline as we had ran out. Strangely the pharmacy had given us nebuliser liquid but its the same thing really, just packaged differently, so we took it anyway. We slept most of the way there and Mummy and Daddy were chatting about the ‘what if’s’ and the plans for the week. Daddy came out with ‘We are all facing the unknown here’ and Mummy laughed, she said we are going to Butlins not flaming Narnia!

We arrived, checked in at the drive-thru window and parked the car. We went for a little walk to find the apartment and have a nosey around before we could get in to our room. We got a little lost and couldn’t find our apartment but we got there in the end, the key wouldn’t let us in as it wasn’t quite time so we went to explore the skyline pavillion ‘big tent’ and all that it had to offer. We found the Teeny Tots section behind the stage with all Little Tikes toys and we had a quick 5 minutes play. Austin trapped a little girls fingers in the door of the plastic house by accident. Great start. Luckily straight away we realised that everyone here was growing a toddler and everyone was on the same page. No big deal!

Once we were allowed in, we realised that we were neighbours with the only other people we knew at Butlins, and no it wasn’t planned that way. We were next door to Nannie Di’s cousin Lesley, and her Daughter Jaime and her daughter Jaylah and their friend. What a coincidence. No pressure for keeping the noise down!

We unpacked everything, went for a wander, had some tea and then set off for an adventure into the skyline pavillion and all that the evening had to offer. Austin bent down and had a little toddler moment where he didn’t want to go, Daddy asked him if he wanted to spend some pennies and he jumped up and kept walking. A passing redcoat witnessed it and thought it was comical. We used this bribe a lot in our short time there. We spent a lot of pennies.

We spent 10 minutes in the slots and then went to Reds for the Mr Potato Head show. We managed about  30 minutes in there and we felt really proud because they managed the dark, busy and loud environment really well and even showed interest in the show which they wouldn’t normally. And this is what the week was all about, new experiences, learning and lots of family fun.

We made our way back to the apartment and everybody climbed into bed. Austin was really chesty and Rory needing lots of suction. We put it down to the change in environment or the drastic weather change.

As Daddy climbed into bed, he told Mummy that his new PJs were far too big and he had put them straight in the wash bag. Mum lifted the covers and asked what he was wearing then, and then he came out with it… just in case pJs! I mean really, do you know any other 35 year old men who pack just in case pjs?

The night turned into a bit of an all-nighter. Rory required 38 suctions between 8PM and 6AM. Which is around one every 15 minutes. Not only did we worry about our neighbours hearing the machine which sounds like a helicopter hovering above or somebody drilling and wondering what it was, but mummy and daddy were facing a really crazy week of tot-fun and on no sleep.

Mummy wondered whether we should go home, especially as our breathing deteriorated. She feared we may end up in hospital and she wasn’t being dramatic. We had obviously picked up some kind of respiratory virus / chest infection but the change in weather and different environment clearly wasn’t helping either.

As we had all had a rubbish night, Daddy especially only going to bed at 4am, we gave daddy some sleep time and we enjoyed some mummy time in our little living room, chilling out. Mummy was giving us our inhalers, we very rarely have them, if at all, in fact NEVER, but we have them because usually when we go to hospital, that is what we are given, and mummy takes all our medicenes just in case, anyway, she was giving us our inhalers but as usual, Austin doesn’t allow anyone anywhere near him unless he is in control. Mummy had a brain wave. Austin thinks sneezing is funny. So Mummy sold the inhaler to him as a magic sneeze. You hold it to your nose, do a fake sneeze (at the same time as pushing the inhaler and getting the ‘shhh’ noise and then we count to ten, really animated and keeping his attention whilst holding it to his face, then go again. He loved it. He kept asking for his magic sneeze, which gave us bartering tender for the remainder of the week. He loved it! Win Win – well done Mummy!

We had discussed how we were going to do nap time whilst on holiday, whether we just stomach the hour or two in the car missing out, to make sure that we have the best crack at a lovely fun-filled afternoon with no meltdowns, keeping routine and all that jazz, or whether we just take the prams and let A&R drop when they can’t take any more…..obviously we went with the routine and especially as  we had all had such a rubbish nights sleep, we needed a good nap in the car.

Mummy evaluated our breathing and knew that if we walked into A&E or even went to see a GP, we would be admitted, and nobody wanted that and so Mummy and Daddy went and bought a nebuliser as we didn’t have one with us and that was the first point of action if we went to hospital, 4 hourly salbutamol, 6 hourly atrovent, and 4 hourly saline nebs with 6 hourly paracetamol for any discomfort or temperature. And that became our life for the rest of the week.

When we had finished our neb and the inhalers, there was a short period of time when we were managing our symptoms and so we made the most of that time with a quick visit to the teeny tots playroom which was literally in the building next to our apartment. We were also up against it with the weather, if we were this poorly at home, we would be in our PJS and not leaving the house and we certainly wouldn’t be going out in the rain. So we went to the activity closest. We managed a little wander around, a quick tea at Butlins version of Nando’s (because the first place we went didn’t have any highchairs left – not great for a toddler specific event) and if it wasn’t for Rory trying to escape the booth into the window bottom and sneaking into the booth behind us, it was the giant stinker he did about 3 minutes after my food arrived, and then dipping his wax crayon in my ‘slaw and forcing me to lick it off. Toddlers!

We called at the toy shop where Rory actually chose a toy, which is a huge milestone, he told us what he wanted, choosing a Ben & Holly rocket, and Austin a Thomas track and train, Daddy said he wouldn’t have cared if he chose the most expensive thing in the shop, he could have had it, it made Daddy teary that he had chosen something. We made our way back to the apartment and had another all nighter of nebs, inhalers and suctions.

Mummy & Daddy were so tired, Austin and Rory struggling and everyone trying to drag their ass through the week and avoid the inevitable – cutting our break short to return home.

Wednesday morning, 6am, Mummy started packing. The decision had been made, Mummy knew that we were really struggling and the sensible thing was to be close to the childrens if Mummy & Daddy couldn’t manage our breathing and we had to go for help. When you have two children with low immune systems, chronic lung disease, a tracheostomy and a history of being on life support due to a common cold……you find yourself expecting the worst, but also very experienced in managing symptoms and knowing how far to push it. Mummy knew she was on the line!

Once we were all packed, we had a little ride on our trikes to the arcades to trade in our tickets and then made our way back to the car. If you can imagine the chaos, two children, two trikes, a shed load of medical equipment not to mention all the stuff a family of 4 take with them on a self-catering holiday and to make it even more tough – an upstairs apartment. So the plan was for Mummy to go to the car with us and get us strapped in, pack the trikes, whilst daddy took a trolley to the apartment and grabbed the bags. 5 minutes later, no sign of him. The phone rings. Austin is crying, Rory is needing constant suction, Daddy can’t get in the room because the key card won’t work. Mummy talked him through it and he still couldn’t so he came back to the car park to swap with Mummy. Mummy ran back to the apartment and managed to get straight in. She ran up and down the metal steps and loaded the trolley up with bags, leaving 4 behind in the corridor. She got back to the car park and offloaded the bags, sending Daddy back for the remaining 4. 5 minutes later, phone rings. ‘There’s no bags here, somebody must have took them’ Mummys heart sank. it was Rorys medical equipment. Lesley might have took it in, knock on the door, see if they are in she told Daddy. Daddy knocked on the door. No answer. Mummy told him to look around and ask someone for help. There was nobody.

Then the penny dropped. Ash, are you even in the right room? Oh shit no! was his response. What a tit! Shortly after, Daddy returns to the car with the remaining 4 bags, blaming sleep deprivation!

We knew we had made the right decision.

Wednesday night was an all nighter. staying downstairs caring for rory through the night.

Thursday was a PJ day. Mummy and Daddy pulling out all the stops to get the nebs and inhalers in us. Mummy even resorted to plugging the extension lead into the outside socket, then the nebuliser into it, to give us our nebs in the car during nap time.

Austin doesn’t allow the neb when he is awake, so it is the only way Mummy could ensure he got a decent crack at it. It is very noisy, so Mummy thought if the actual machine was outside the car, he wouldn’t hear it, and if he stirred and opened his eyes, mummy could pretend it was for Rory who was just next to him.

Mummy later adopted a new idea. Austin loves role play with the baby (doll) and so we sat the doll on his knee and asked him to give a neb to the dolly, which meant he was actually breathing it in without realising. Another Mummy win!

Nannie Di came to play and she played with Austin for ages in the playroom whilst Daddy and Rory slept and Mummy did an online food shop because she literally couldn’t leave us, nor had the energy to go and do it. This helped lots.

Rory’s nurse came to visit too.

Bed time soon came, another all nighter.

Mummy and Daddy split the all nighters into 4 hour shifts but with the level of care we were both needing and the meds 4 and 6 hourly falling at all hours, there wasn’t really any rest for anyone.

Mummys fit bit sleep monitor averages at 4 hours 7 minutes broken sleep a night this week. This is the worst she has known us be poorly since the very early days and she is absolutely amazed that between mummy and daddy and their level of equipment and experience, they have managed to keep us out of hospital. We still have a way to go but are making progress in the right direction. We aren’t struggling with breathing quite as much, the wheeze isn’t as bad, we aren’t sucking in anymore either. A couple more days or so and we should be on the home run!

To finish this blog with a smile on your face. Despite been poorly we still managed to hide in the wardrobe at Butlins. Daddy took this fab photo upon opening the door…






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