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(01-08-2021, 03:53 PM)SarcasticDave94 Wrote: I am curious to see the proposed settings and OSCAR results.
BTW if nobody from your side of the pond has mentioned, any mask that works on CPAP can work ASV/PaceWave as long as it's well suited to the user's facial features, size mainly, and that nearly leak free or I should say leak controlled is completely fine for an ASV/PW. So if your daughter has a favorite mask from the past, it should be fine still. Saying because some medical support personnel tell new ASV/PW users that X mask can't handle ASV duty. No it is fine.
She has a full face one for the last while and she either has none or just a tiny pinch of a leak. So it’s great and she loves it. We went through a few to find this one and it’s the best we’ve tried.
I’m also gonna wait a few days and check her Oscar results. I’m curious too to see the difference now. I’d say it’ll be dramatically different because her Ahi’s unbelievably amazing!
To say I was shocked this morning is an understatement!
OK that sounds very promising. If you've got any questions feel free to ask it.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
Nicola great to read I am in England so not far from you and I would in normal times be commuting to Dublin every other week I am so glad your daughter is doing well on this machine. As others have said any questions or worries pop back here and ask.
I know people were curious about how my daughter is doing now.
I saw a very dramatic improvement in her ahi on this machine. Don't get me wrong I can still hear her cutting out and fighting but I'm not seeing the massive numbers I was seeing.
we get to see neurology next month just to check and be on the safe side, just incase anything is going on there. She has other concerns other than sleep apnea that may mean something neurological going on.
She's also still very tired and exhausted and I think her body may be losing in the fight with this machine - I mean her body doesn't want to breath but this machine is actually helping her to and from what I see her body is trying to fight that. so I put the tiredness down to that. hopefully that starts to disappear the longer she's on it. And I really hope this one doesn't go downhill like the last 2.
she's a dream on machines for maybe 3-4 months then it starts going bad.
I'll attach a screen shot of one of her recent nights.
Thanks for checking back and updating her progress. This was a very interesting and emotional thread to be involved with, and it was very satisfying to see your daughter's improvement with the ASV therapy. As you evaluate it longer-term, keep track of the minute vent as a good measure of effectiveness and efficacy of ASV. The chart shows that your daughter has a high percentage of spontaneous respiration and some very quiet periods where the machine does not intervene a great deal. That is much better than the intrusive ST that was constantly hitting her with high pressure and pressure support. There are some UA events that are still at an acceptable level. Those are most likely obstructive, and we can see the machine increases EPAP pressure in response to those. My usual suggestion on seeing a chart like this would be to increase the EPAP min by 1-cm. I'll leave it to your good judgement to take or leave that suggestion as you see fit.
I don't see a "fight" here for control of respiration, but a dance of interacting dependence on the ventilator, and the machine responding as needed. In a perfect world, no child would require this assistance. The sleep session is quite long at over 12-hours, so in looking for what causes fatigue, tiredness and even response to the machine, do not forget to look at factors external to this aspect of her therapy. Her tiredness may have other causes, but it's very complicated to differentiate a source of fatigue when so many different factors can contribute to it. The ASV is just so visible, it is tempting to assign the problem to it. It sounds like you and her doctors are doing a deeper dive into those issues. She is quite a trooper putting up with all this.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
She’s scared of sleep right now so a chunk of that is her not asleep and eventually nodding off and waking on and off. But I’m happy with where she is now.
She’s amazing, I don’t think I could ever tolerate anything she’s gone through over the last number of years. She leaves an amazing impression on the doctors and nurses she sees, and others too.
The fight we’ve had to get to here has been unreal, I’ve had many people praise me lately for fighting for her. But to be honest aren’t all parent suppose to be like that - I find it hard to take the praise.
I will say tho that my body took a big sigh of relief after the first night on this machine. Then a few days later my body relaxed and I ended up taking a turn and was out of action for a week. These situations do take a huge toll on people.
Now I just need to keep everything crossed that she’s stays this good on it! ??
On the chart you posted, we see the irregular breathing where she is probably awake lasting to 1:30, then sleep sets in and looks really good. From what you're describing, I think you both would benefit from counseling on anxiety and how it affect your sleep and well-being. The ASV has resolved the medical need to BREATHE, but the experience of getting to this point has to be traumatic. It could be that is what needs the most attention.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
I hear most things are going well, despite the tiredness. I too think it's part of the fight just to get here, to the proper treatment that is. I've learned that sleep is very complex and very easy to take for granted when all's doing well. I'm confident you're doing what's right and the docs seem to be helpful. Finding ways to maximize good sleep is likely a realistic goal now. PAP therapy is doing its best as I'm seeing it. Keep after the answers in other puzzle pieces and I'm sure you'll win this. You're in our prayers for success, and keep updating as you can.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
