A weekend away

After five and half weeks of home time Freya fancied a break and we ended up at St Mary’s paediatric intensive care unit. After four nights we are back at home and overall it was a pretty good little break.

A good little break at the PICU? Let me explain.

Last Tuesday Freya was just a bit off. She had a couple of vomits and her heart rate was raised overnight. Wednesday morning we decided to put in our sickness prevention programme – keeping Freya on the ventilator, giving her frequent nebulisers, chest physio, feeding her small amounts through her peg and keeping her nice and hydrated. She started spiking temperatures, but we managed to keep these down with medications and I started making my rounds to make sure hospital bag was packed and that we’d be ready to go if need be. Freya was in pretty good spirits and settled to sleep well.

At 4 a.m. I woke up – her alarms were making noise and the night nurse told me that Freya’s o2 saturations were going the wrong way. Nothing dramatic, but when additional oxygen did not make much difference I knew it was time to dial 999.

As it works out, Freya’s main hospital does not have A & E. You can only come over invited. So the ambulance took us to our local and we promptly landed at resus.  For those who haven’t had a pleasure to visit resus it basically stands for resuscitation. This time Freya was not this ill, but it’s still best being in the safest place. And at our local this is resus.

For most people, taking their kids to A & E is a long and painful process. If you kid is too ill to go home you end up at the paeds ward.  Stressful times, but largely things get resolved and after a couple of days you are off with a follow up prescription and stories to tell your peers. Things are not quite as straightforward when your kiddo is a bit more complex. First of all, our local cannot admit us. They have only a few trachy trained nurses. None of them know how to use Freya’s ventilator. So it’s always going to be a pit stop before we are off to bigger and better places.

The sequence of events is generally this: Freya misbehaves. We call 999. Ambulance arrives. We pack up and I try to explain what cerebrocostomandibular syndrome is. When we get admitted I find whoever is in charge and give them a folder with all Freya’s key information – professionals involved in her care, list of meds, care plans and most importantly the emergency admission plan.  The plan is to stabilise her, get some bloods, call up her respiratory team and start arranging her to be picked up. Simples!

Or not. This time Freya was too well.  The plan in theory is to send her back to her respiratory ward if she is well enough or if there is space. If the answer to either of those questions is a no, then the next port of call is the PICUs in London. And there aren’t many. And they tend to try to keep their beds for kids who are really ill, like “knock-them-out-put-tube-down-their-throat-and-ventilate-them-with-a-big-ass-ventilator” ill. And fortunately, this time, we were not there.

So we stayed at resus. Freya slept and I chatted to the nurses. The doctor on call spent best part of 12 hours trying to negotiate a bed for Freya. No one seemed to be keen on taking us in! I looked at the nurses’ holiday pics (there are some nice beaches in Poland, believe it or not). Ambulances brought more people in. Freya wrapped herself in her dog blanket and I taught the nurses to decuff a foam cuffed trachy.  The mustachioud bad manager was lurking around giving us stern looks. I drank an incredible amount of coffee.

…and 12 hours after we arrived, we were finally retrieved by the CATS (Children’s Acute Transport Service, these really amazing nurses and doctors who drive and fly in helicopters to pick up sick kids and take them to intensive care). Soon after we arrived to St Mary’s and their amazing team fixed our baby up in 4 short days.

Not your conventional weekend break, but during those 4 days Freya’s dad and I got some good sleep at nights. After days in hospital we went out in evenings and had dinner and drinks with some friends. I drank some wine with Freya’s godfather. I went to enjoy some Lebanese food with Freya’s godmother. We had some fun times catching up with the staff and after Freya started feeling a bit better she enjoyed the attention and admiration from her loyal servants.  So all in all a good hospital trip. I would go as far as describe it as quite a pleasant weekend and of course it totally sucked that that Freya was ill, but being a glass half full kinda gal it was great how well St Mary’s people looked after Frey Frey (including doing her laundry) and how us parents got a bit of time to do grown up stuff (read: wine).

If I had to be negative about the experience there is something  wrong with this equation. It cannot be the best use of tax payers’ money to put kids in PICU who don’t need it to intensive care. It’s not smart or cheap. I dread to think what would have happened if we were in middle of snot season and PICUs would have been full of very sick kids. Where would we have gone?

It also does not make sense for a fairly senior A&E doc to spend 10 hours on the phone, pleading for a bed. Or a desperately busy retrievals unit to pick up with kiddos who are just a bit ill.  It is not good for a kid with an infection to be stuck at resus for 12 hours.

I understand that district hospitals have sometimes a hard time with medically complex kids. But it’s not like we are the only ones – there are more than 5, if not more than 10, trachy vents who use our local. More and more of medically complex kids live longer and at home. It must follow that district hospital have to catch up.  And not catch up by expecting parents to nurse their children in a hospital 24/7 – if your child is ill enough to be hospitalised the professionals must be able to care for them. Not an easy problem to solve.

But all’s well that ends well. We are back at home. Freya’s back to her mischievous self and we are getting back to our routine. We would be grateful if someone could explain Freya there are other places to visit too. Even if they don’t do her laundry.

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