Living at hospital

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We’ve recently come home from after a week living on Ward 1C at Alder Hey. It was only supposed to be a 48 hour stay, but as you know by now, Isla likes to change plans. As we were only going to be there for 48 hours both my mum and I opted for smaller bags rather than the long term stay bags. Big mistake. During the 1 week we were there I think Britain went through all the seasons in the calendar and even invented a few new ones. When we arrived there was a heatwave that was due to last for the next 10 years. The floors were wet with the sweat of nurses and the tears of boiling children unable to handle the heat. However, 3 days later and it was blowing a gale and the rain was bouncing. I swam to Sainsbury’s across the road a few times to restock underwear and sock supplies, get Isla some full length baby grows (as we’d made summer modifications to the ones we’d brought) and Grandma went to get herself a cardigan.

As we were only due to be there for 48 hours, we didn’t go for a Mac House referral. Fortunately, the nurses were very accommodating (legends that they are) and were able to put up both Grandma and I so we could both stay close to Isla. Given how Isla is most of the time she doesn’t need hooking up to monitors and won’t be still enough to be on monitors. We know her danger times for both arrhythmia and seizures. Other than when she was a very tiny baby she’s never had issues with Oxygen saturations and she isn’t on any iv medicines. So in many ways she is healthy enough to not be taking up a bed on the ward, as she’s hardly ever in it. The bonus is now though that we no longer have to carry her round everywhere as she can walk. The staff in Neonatal even commented on how big she now was and how much she had grown since they last saw us rocking her up and down the corridors. In the 7 nights we were on the ward we had 5 different bed spaces! From Green Bay, to Orange (day case), to Blue (HDU beds), back to Green, back to Orange.
The beds in Orange are so much comfier than the back breaking couches on the ward. The poor poor couches. The fold down arms in most of the rooms need a hospital themselves. The last couch I was on had both ends broken so sleeping on it meant I was actually sleeping in a bow shape (I should amend the entry on my TripAdvisor post to reflect this, but the cup of tea Di provided keeps it a solid 9). I ended up curled up in the middle section, which I measured to be smaller than Isla’s cot mattress. Still, beggars can’t be choosers!

With Isla being like she is, living on the ward is very different experience for us. Isla doesn’t even look poorly (unless she’s having a seizure (Sorry Rachel)) so when people see her running about and playing like she owns the place it sometimes seems hard to justify her being there. This was one of my concerns when Dr Johnson told us to come in. Isla is already different in the cardiac world as she hasn’t had open heart surgery. She is ‘only’ rhythm (No matter how many times I write rhythm, it’s still hard to spell!) so it looks like she’s a fraud in the world of 1C. I am glad I did cave and take her in though as it did prove useful to have the monitoring as it picked up a pacing issue and allowed us to adjust her doses safely.
This isn’t my biggest issue with living on a ward though… Your day is run by waiting for doctors. I know this is the same for other parents too. First off, you don’t want to miss ward round, even when for us ward round was often, ‘We won’t change anything, we’re waiting for Dr Johnson, who none of us have seen today!’ Ward round times change though each day, depending on the consultant, how busy the ward is and which bay you’re in. With this in mind, timing trips to the toilet can be complicated. You don’t want to be in there when the doctors are going to come in. However, they’re not the only consideration. Your bins get changed twice a day, cleaners come in and mop (and clean, well depending if it’s ‘Happy’ doing your room anyway), and nurses come in to do obs. All of this equates to a very small window of opportunity for what should be a relaxing break! I know someone who even has a lookout so that this time can be well protected, don’t they Claire? 😉This also applies to using the shower there, and I know this is the same across Europe as sometimes staff walk in when you’ve just gotten out the shower, don’t they Guillette? 😉

Not long ago at the Ball, Kerry said, ‘Aww I miss the nurses on 1C.’ There’s a lot of reasons to miss them, they’re a lovely bunch and when you spend a lot of time with them they become part of your family. They see you in the best and worst of times and care for your child like they’re their own. However, I also don’t miss the nurses, as seeing the nurses means we are in hospital. Isla is now at the age and stage where she knows her surroundings and loves her toys. If we’re seeing the nurses it means I’m admitting I need support with her care. I don’t like giving up the control of Isla’s medicines. On one hand she was being super scary with her rhythm and I was getting stressed about keeping her safe and constantly hooking her up to see her ecg. On the other hand, I like being able to monitor her myself and change things without doctors having to sign everything off. For example, on the day we were being discharged, Dr Johnson changed Isla’s time and dose for her Propranolol to marry up with her Mexiletine times. However, he changed it for the current day rather than the day after, meaning the dose we were brought was too low. It was obvious what had happened, but it took a lot of phoning round and messing about to correct. Red tape (understandably) all over the place.

I now need to go for a jog or something (I definitely won’t actually do that) because being on the ward for a week has added about 10 inches to my waist line and I’ve gained an extra chin. Costa threw us a leaving party when we went. Lots of tears, their profits will again plummet now we have gone. I reckon the manager of the franchise there can probably pinpoint weeks in which Isla is an inpatient. Costa F’in Fortune.

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