IAQ 2 - What is the deal with Izzy’s breathing, and what are all these different types of oxygen you talk about?
17 June 2018 | Tamsin Kingsley
You may be relieved to read that this is an information only post, so you are free from my (so called) deep thoughts and wise words. Izzy’s breathing has been our main source of concern over the past year and while people have been lovely in listening to what is happening at a particular time, I thought some might appreciate hearing a bit more of the big picture- past, present and future.
This is a hard one to answer as we are still not sure why she struggles so much with breathing. Izzy has frustrated our respiratory consultant from day one. He’s always very keen for surgeons to have a look down her throat, and always disappointed when they don’t find anything particularly exciting. He wants to fix her but it’s hard when we don’t really know what the problem is!
What we do know is that due to her low muscle tone she has a bit of a floppy airway that can collapse in on itself a bit causing obstruction in some positions or when upset. She also has a bit of a narrowing at the top of her airway, as well as narrow nasal airways and a floppy tongue which can again obstruct the flow of air. When she was born she had to be positioned on her side to prevent her oxygen saturations (sats) from dropping. As she got older her position became less of an issue but when she cried her sats would still drop. This still happens to some extent now, but is manageable as she always recovers without help. However, when last winter came she immediately started getting virus’ and chest infections, and basically the extra strain this put on her lungs and airways meant that she has really struggled to get enough air and oxygen into her lungs, especially when sleeping. She has been constantly on the edge of ok, and simply a bad sleeping position or extra snottiness (for example) could quickly push her to needing hospital admission.
In hospital she has sometimes been put on high flow oxygen, or vapotherm. This is different to normal or low flow oxygen as it is a humidified mixture of air and oxygen that is under high pressure, meaning the patient doesn’t have to work so hard to breathe. Izzy loves this but it is noisy and not something you can have at home! So they always get her back onto low flow before we can go home.
This year we ended up taking oxygen (low flow) home with us, but we were always just getting used to it when she needed rushing back in. The problem with giving Izzy oxygen is that while you can make sure her oxygen levels stay up, the obstruction means that air just isn’t moving in and out of the lungs properly, so carbon dioxide builds up in the blood, making her poorly.
This high carbon dioxide level is the reason she is now on BiPAP, or NIV (non-invasive ventilation) overnight. This is as opposed to invasive ventilation where you are intubated (tube down your airway) to help keep you breathing. Izzy has had this shortly after birth and also after her big crash, and it is quite horrible and scary as you have to be heavily sedated to prevent the tube from moving. The BiPAP however is a small and quiet machine (yay) that pushes humidified air under pressure into her lungs and then has a lower pressure so she can breathe out. It can be used to give oxygen but she isn’t needing that, it seems the pressures are enough to help her. She has a little nasal mask which makes her look like some kind of strange elephant/giraffe hybrid (see photo). She’s not a big fan of it, but the whole system has made her happier and brighter in the days, with no need for oxygen even in her naps. We are so thankful for this machine and hope it will keep us away from hospital.
We have no idea what the future holds for Izzy’s breathing, especially what might happen next winter when the virus’ come back. One suggestion that has been made time and time again is a tracheostomy (tube into her neck), but we feel strongly that this is not the right way forward for Izzy and that if we can find other ways to manage her breathing this is preferable.
Our hope and prayer is that as she gets stronger, her airway gets less floppy and safer, and that she will eventually be ok without the overnight ventilation. But for now we are just super grateful to have found a way to keep her stable and healthy.
Oxygen/low flow: oxygen under low pressure given by nasal cannula (up to 2 litres) or a mask if more is needed.
High flow/vapotherm: humidified oxygen and air under high pressure given by nasal cannula
Invasive ventilation: tube down the airway to assist with breathing or totally take over breathing from the patient by giving air and oxygen under varying pressures.
Non-invasive ventilation: air and/or oxygen delivered under either continuous (CPAP) or varying (BiPAP) pressures by a full face or nasal mask.
Disclaimer: I have done zero research to check whether any of this is medically correct so feel free to correct me if I’m wrong about anything. This is simply my understanding from watching and listening over the past year.
I am a 30 year old living in Leeds with my husband and two children. I am a full time mum and carer to Lauren, 4 years and typical, and Izzy, 2.5 years with Down's Syndrome. Izzy has complex health needs mostly due to her low muscle tone, and struggles with feeding and breathing, resulting in tons of appointments and hospital admissions. Both children are happy and full of life, and our family all love each other very much.
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