Jovie wakes up and we have to empty any water that has collected in her ventilator tubing, this happens often and is pretty dangerous as left alone the water could easily go back into Jovies trachey tube when she sits up and straight into her lungs causing all manner of problems.
Suction.
Jovie has to sit up while we attach a saline nebuliser to her Trachey via her ventilator. After this runs through we give her chest physio.
Suction.
After the saline nebuliser its a colomisin one, an antibiotic type medicine administered in the same way that helps fight off trachey infections, something we've had dozens of over the years.
Suction.
After vent turned off and tidied up, we deflate the cuff within the trachey with a syringe. Water is used to inflate it in order to close off the leak around the tube as Jovie has steadily outgrown it over the years. While inflated she can barely make a sound. After this, a cap - either a sealed off red one or a clear speaking valve that still allows some air to pass through - is attached to the end of jovies trachey. Often she will take this off while eating as it "feels funny" during this time with her airway exposed its more of a risk than normal so we stay on our toes even more. Eating will generally cause coughing and increased secretions.
Suction.
Morning routine done, every day Jovie has to have her tapes changed. So while holding the tube in her neck so it doesn't fall out, we wash, dry and cream her neck - it's often sore due to the velcro rubbing or because she's been sweating - new tapes are applied with padding to try and protect the hole and skin around it. All this usually causes coughing.
Suction.
That's every single day. Once a week the tube is actually removed and replaced with a clean one. The whole process usually lasts ten to fifteen minutes.
At bedtime, the entire morning routine is essentially repeated. Every single day.
The spare tubes and variety of cleaning products and pieces of kit are kept in a room which is basically a store room also full of other trachey related equipment from spare tubing to boxes of water for the humidifier, hundreds of suction catheters and lots of circuits. (Thank fuck for the free nhs). Every week we order new stock to be delivered or collected. Almost every week the wrong stuff is brought or things are missing. Not a big deal, we're used to it and see the funny side after 3years & 7months (approx 146 weeks/deliveries).
During the day, purely trachey related, everywhere Jovie goes her suction machine - size of a large toolbox and as heavy as one - goes with her. Along with a lunch bag sized emergency bag with spare tubes, tapes etc in.
As a result of the tube, eating is dangerous and nerve racking at times. All food is scrutinised for size, shape and ease of swallowing. Jovie can't swim, doesn't get to bath properly and needs to be super careful when drinking. Other kids often ask about it. Parents just tend to stare.
Since June 2011 when the trachey was 'fitted' it's nearly killed Jovie once (after it was the wrong size to begin with), it's caused emergencies at home, at Acorns, in bed and while eating. It delayed her speech. It's been made bigger, fitted with the inflatable cuff and has caused countless infections due to the fact it's an open route to her lungs and essentially a foreign object the body is continually fighting off. It's restricted the ability to go places without transport, robbed us of a room in the house, cost the nhs probably £1000s and been a bloody nuisance on almost a daily basis.
It also saved Jovies life. It was introduced at a time when other avenues had failed and nothing else would work. It's allowed us to live a (relatively) normal life. Has given us the freedom to stay out when Jovie has fallen asleep or go on long car journeys. It's also helped us come to terms and manage jovies condition and has even helped fight colds and bugs in allowing us to get all that sort of crap out of Jovie easily via the suction machine.
It has been a curious addition to our lives. One we must be hugely thankful for while at the same time are utterly, and completely fed up with.
It's time is, thankfully up. Through natural development, hard work, luck (I guess) and Jovies own incredible will we are now at the point where we are set for the biggest change since the trachey was first introduced.
While Jovies condition remains the same, we now move on to the next chapter. Ventilation via a face mask. A huge change in so many ways. For Jovie, certainly while awake it's relative 'normality'. No tube. No suction. No inflated cuff that stops her from talking. No carer while she goes to school. No (or at least a lot less) specialist training needed to be left alone with friends and family.
For us, less equipment. A routine with our daughter that can include proper baths, falling asleep on the sofa, swimming, eating like a pig without fear of blocking a stupid fuckin pipe and so much more. Probably incredibly trivial stuff, but stuff I actually cry about the thought of being able to do. An actual proper, bubbles over the edge, dunking her under and tipping water on her head bath!! Surfing! Paddling pools! It's all going to be possible.
Yes, the face masks will come with their own baggage and problems no doubt. I'm petrified about how reliable the ventilation will be now it won't be via a direct route to her lungs. I've known nothing else almost her whole life so in many ways have no idea how things will be without the trachey. There will still be stock orders and with them the delivery of the wrong stuff I'm sure! Colds and bugs for Jovie may even be harder to cope with in many ways as the mask will probably be more awkward to mange while she's awake than the trachey. It's a massive change for us, but one that Jovie needs and bloody deserves.
So it's off to BCH again to get the ball rolling. A couple of nights ventilated via a mask with the trachey still in place but blocked off. All being well the tube will then simply be taken out, the hole simply plastered over and left to heal on its own which can take a month or more apparently. Then it will be no more tracheostomy.
One day we will tell her all about her time living with the trachey. There's a memory box with some stories to tell we will show her. Having known nothing else really it's actually mad to think that stories and photos will be all we have to show for it. Hoping it's the right choice and things go as smoothly as possible. Scared. Excited. Ready for a big change. #RollOn
First ever night with the trachey to...
...possibly the last! ❤️ this 🐒
