Ok, I am making am attempt to write a blog using my mobile. you will have to forgive my spelling errors (obviously they will be the fault of the phone) & the grammatical errors (too hard to bother too much with grammar). I thought I would blog about what is going on with Didabell because there isn't enough space in my facebook status to fill you in and I'm sure that not everyone is interested anyway. So for those of you who want to keep updated on what's going on, you can just check the blog.
This all started a few months ago when Diddy began to sound really snuffy all the time on top of snoring like a champion. Having had one child who had obstructive sleep apnoea I knew what it sounded like and mentioned to my gp that Diddy had it too. He referred us to the mater paediatric respiratory unit for a sleep study.
We came for our appt at the mater last week and the Dr wanted to get her in for a sleep study as quickly as possible because she is so little. He told us to go home and wait for a call - we were going to be called when there was a cancellation. We didn't have to wait long. Less than a week and we were back.
I turned up at the hospital at 5 and they fitted Didabell with 6 million wires. I settled her in and then just read in the room. I had a terrible time sleeping. I knew that the nurse was worried about her oxygen levels and I was so uncomfortable (i hadn't bought my latex pillow with me - the sacrifices we make!!!)
In the morning I suspected the Drs might say to me 'yes she had apnoea, we might need to take her adenoids and tonsils out when she is a bit bigger'. But it turned out to be a little more complicated than that.
When Isabelle stops breathing in her sleep her oxygen levels were dropping to just over 70%. Usually when this happens your heart beats faster to get more oxygen around your body but Isabelle's heart was slowing down.
They said she needed to stay in hospital until they could sort it all out and that she needed to go home on a CPAP machine. A cpap machine blows air continuously up her nostrils to keep her airways open. She will need to be hooked up to a machine whenever she is asleep. The Dr said she would likely have to use this machine for a few years.
The mask is quite scary looking. I had seen a cpap on Jazzy when she was a tiny baby and it just looked like little prongs up her nose. Isabelles cpap looks like something out of a horror movie.
So we are now up in the childrens ward waiting for her to have xrays, a barium something or other & a camera put inside her, which will be done under general anasthetic. they are trying to find out what is causing her obstruction. They don't think it is her adenoids and she doesn't have the othersymptoms required for it to be floppy airways. they are saying they think it may be a cyst in her throat or maybe a flap of skin. personally, my money is on adenoids!!
So here I am having to face all my darkest fears - shared rooms, polyester linen, public toilets etc. Luckily for me little Diddy is her normal happy, self and I managed to sneak home yesterday to grab my beloved latex pillow (those of you who have read my previous posts will understand!!).
I am not worried or stressed about her because I know she is fine. I view this probably in the same way parents with kids who have allergies view an epipen. I am just so thankful that the technology is available to help my baby.
Well the drs just came in and saw us. He said if everything goes swimmingly well we may be able to go home on Monday or Tuesday. It depends on how fast I learn to operate the cpap machine and what the tests show up. She is going to have to use it for all naps as well, which should make going out very interesting!! AND also in the car!!
Anyway, this post has taken me a whole 24 hours!! I don't know what I am going to do with myself now that I have finished.
Will post again when there is more news.