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Sleep Study and non invasive Ventolation

Posted: March 2nd 2010

Tina_EvesMum

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Eve was admitted last night to the sleep Unit at the Children's Hospital. Typicallyfor the three previous nights she had been dipping in sats and racing heart rate causing me to be up to her every 15 minutes to half an hour. This on a litre of Oxygen. I kept telling her she had to save these bad behcviours for them to see on the sleep study.

So 7 pm last night we were wired up and video running and the oxygen disconnected.....she did immediately dip from 98% O2 to 94 and then a little lower 93 92 but hovered then between 92 and 94 %,,,,the idea was to do half the night in air and the second half in her usual 1 ltr and see what apnoea she presented with and whther she would present with any of her new twitches and snorts.

Well I think I once saw the SATs dip to 87 although I did sleep a little so wasnt watching constantly, once she went onto the Oxygen I didnt see it dip below 95%. So I was rather frustrated by the whole thing. At 7 am we started to disconnect her from all the monitoring and vidoeing eqipment and just had her attatched to her own SATS Monitor, within 30 seconds of the video beings switched off she dropped SATs to 91 % on a litre of O2 and then had about 40 seconds of right sided twtching!

Little toad! I swear she planned it!

Anyway the respiratory Doctor came to see us in day care about 10 O'Clock and she had had a quick look through and could see evidence of central and obstructive apneoa's the briefest of apnoea was causing significant O2 dips so the plan is to trial Non Invasive Ventilation. I am not sure if this will be Cpap or BiPap but it wil be arranged shortly in the hope it may increase her daytime alertness. I am hoping she may be settled with it and gaining benefit as the warmer weather approaches and she can benefit from some outdoor activity!

So my daughter is officially stopping breathing...I am pleased to be reporting that!!! Have I totally lost the plot??

I am just so glad that someone else has seen what we see!

Hugs

__________________

Tina Mum of 5 children Eve has just been given a suspected diagnosis of Mitochondrial Cytopathy.

I do not know what the future holds but I am glad I know who holds the future!
Tina_EvesMum's picture

Eve started to use BiPAP non

Submitted by Tina_EvesMum on Tue, 04/06/2010 - 10:17am.

Eve started to use BiPAP non invasive vetnilation overnight 10 days ago. I think we can safely say it has made a big difference to her daytime alertness. She is managing to stay awake longer in the day and is interacting more and taking more interest in things going on around her. Spending time singing and shouting and enjoying life in general. we have had two days out in the last fortnight and both times she was awake most of the time and singing in her chair. Yesterday she chose herself a hat and refused to take it off. Then later last nigiht she was shouting for her Daddy to take her picture! I have recorded the photos on my blog if you would like to look. THey are amongst a few others but unmistakeable! www.lifeinourhouse-tina.blogspot.com Hugs Tina
__________________

Tina Mum of 5 children Eve has just been given a suspected diagnosis of Mitochondrial Cytopathy.

I do not know what the future holds but I am glad I know who holds the future!

red-tape's picture

Yay for Eve! I'm so happy

Submitted by red-tape on Wed, 04/07/2010 - 9:19am.

Yay for Eve! I'm so happy that she's handling the bipap mask well and that it's making a noticeable difference even after 10 days. There will always be some kiddos who refuse to leave anything on their faces, but I think the overall tone regarding a new piece of equipment is extremely important. Kids may overhear phone conversations about the new "whatever it is" and even though they may not understand the words they're hearing, they do tune in to their parent's concern, frustration, anxiety, etc. about the situation. My 12 y.o.DS has been using c-flex since he was 7. When I found out about the lousy sleep study and the non-invasive ventilation that was ordered I felt like there was no chance in the world that he'd keep it on (he was going through a stage where he didn't even keep his clothes on! LOL) Still, we followed the pulmo's advice and kept our feelings to ourselves. We introduced his "sleep cap" and told him that it helps kids have nice dreams (which was entirely true because the mixed apnea was preventing him from going into REM sleep.) Would you believe he kept it on the entire first night and has been wearing it every night without a struggle? I was shocked! It just goes to show you that nothing is predictable with kids. :o) If Eva starts acting sleepy, crabby, or seems to be regressing, it's always a good idea to have another sleep study to check the BIPAP settings, it's always nice to check out the "fixable" things first instead of having a doc blame everything on Mito progression. Take Care, HeidiC