This brand spanking new hospital, with a dedicated respiratory/CF ward, is, for us, pretty life changing.
The care we have received in paediatrics from our dedicated CF team has always been second to none. We always felt safe, cared for, and so incredibly grateful. However, once admitted to the ward, we were cared for on a general children’s ward (at Addenbrookes, this was mainly C3 for 0-3 year olds, D2 for 0-16 year olds, and another newer ward for day cases and overflow should they need the beds overnight). Although we still saw our CF doctors at times, the rest of his care was with general respiratory doctors and ward staff, not the dedicated CF team.
Of the many, many stays we had on children’s wards, we were mostly cared for in shared bays (we only had a room when he was known to be infectious to others with a virus, not a CF bacterial infection) often six children to a room (with parents staying overnight, that meant up to 12 in a room) very little room for the equipment we needed to bring with us, all trying to sleep and keep our little ones settled. For as many times as I worried that others were kept up by Isaac’s cough, or his IV pump beeping, we would be kept awake hearing children in pain, anguish, and their panicked parents concerns. I often got up to give someone a hug in the night.
Worst was the worry that he would pick up more bugs on the ward than we had come in with, or that we would infect others. We were once opposite a very poorly child reliant on regular suction to clear her airways for days, only to then find out that Isaac also had a nasty respiratory virus which he no doubt passed to her.
We will always be so grateful for all the care Isaac received on these wards, but with the facilities that they were restrained with, it was at times difficult, heartbreaking, and painfully exhausting, often meaning he came home infection treated, but less well overall.
On this new ward, he will always have a room to himself. It is so, so quiet! He has a TV, an ensuite, a fridge for his meds, and an exercise bike - and does not leave his room at all, but for certain tests. We feel a tiny bit spoilt... but this is simply what is required to keep him safe in hospital. Due to cross infection risks that come with a shared respiratory ward - CF patients especially are known to have easily transmissible bugs that only others with the same lung impairments will be at risk from, he needs this closed environment to keep not only himself but also others safe.
The staff are amazing, and seem calmer and a lot less stretched than we have seen on other wards (that said, we are only a few days in, and with the closed doors and quiet, maybe we just don’t see the stress as much?). They often check on him, and treatments arrive incredibly close to the times they should do (on a children’s ward, IV doses have often come as much as a few hours late, despite being needed at very regular intervals). This is no criticism, only an observation and concern that children’s wards are inadequately staffed and funded. Or perhaps the improved facilities in a brand new hospital create efficiencies that allow for better care? Or both? I don’t know the answers, I am simply a caring observer and longtime NHS fan.
Today I was signed off to do his IVs again. A few of the nurses asked me if and how many times I had done this before (countless over the last 16 years) - still, there are a few differences (the doses seem more... rounded up in adult care (as opposed to mixing up 8ml from the 2g vial and 5ml in the 1g vial, then draw up all of the 2g vial but only 3.42 of the 1g vial kind of accuracy, this is more - the dose is 3g, use 10ml of saline to mix - super easy), and we can push through more drugs rather than use a pump, so quicker; and they don’t even require me to wear gloves and aprons..so weird for me!). It was good to be observed and have them confirm that I am doing it all correctly. On our next admission, Isaac will also be trained, to offer him the independence to do them himself, should he choose to. Another change is that the doses are much more frequent, meaning five doses a day, which will be quite full on for home IVs when we do get home.
Isaac has been amazing. He’s bored but agrees that it is a good opportunity to get to know the staff and ward. His cough became initially worse on IVs as usual, but already seem to be improving. He’s on steroids too, which may be helping his boost. Tests tomorrow, and hoping to squeeze in a cheeky sinus CT while we are in, to speed up the process to get him a sinus surgery date. Then hopefully home sometime this week to continue the IVs at home. Today we revived a long dormant shithead tournament, is there anything better than a pack of cards for quick and easy entertainment? I love that I get to spend so much time with him, just us.
We are feeling positive. I am on the ward with him all day, and then home with the girly ones at night. It’s at times exhausting (I’m never quite sure why that is, since it’s really a lot of sitting around and eating cheese sandwiches), and I’m equally as pained to leave him as I am happy to be home to see the girls, which has meant happy and sad tears all at once. One thing is for sure, they are all growing up so fast, and I love them all so much. OK, that was two things, sue me!
One blue eyed blonde, one hazel eyed brunette, and one very curly dude happy with chocolates on the ward ♥️
Cystic Fibrosis is a life limiting, genetic condition, affecting some 10,000 people in the UK alone. CF sufferers often, as a last resort, need to trade in their damaged CF lungs for the lungs of a generous stranger. To sign up to support organ transplantation, please visit https://www.organdonation.nhs.uk/ and tell your loved ones of your wishes, as even when signed up, the decision becomes theirs after death. Thank you.
