They increased daughter's pressure

Mabutu wrote:did the doctors say what caused her to need CPaP?

She had it when she was a baby. Outgrew it for a while and now has it again. It's likely a result of a genetic condition her older sister and I were diagnosed with. We just haven't gotten her into genetics yet

The photo is sweet as ever, thanks for posting it.

kaiasgram wrote:The photo is sweet as ever, thanks for posting it.

She's a good kid!! Still amazes everyone at how she took to the CPAP like it was nothing! She loves it though

She is so cute

I hope they allow her to go slowly raising the pressure, to me decide she needs 10 without a titration is plain nuts. She is a small kid to have such a pressure raised like that, there is nothing to determine the right pressure without titration.

Thanks for the pic

Rosie

SleepyonMagnoliaSt wrote:Here's the kiddo asleep with her cpap!

Ohhh... she is so adorable and obviously sleeping so peacefully.

SleepyonMagnoliaSt wrote:Here's the kiddo asleep with her cpap!

Looks comfy *smile*...cute, thanks for sharing!

She slept 10 hours last night with a pressure of 10 and her AHI? 0!!!! WOOT!!

SleepyonMagnoliaSt wrote:Here's the kiddo asleep with her cpap!

May her friends never find this.

I note that the top "back" strap has ridden up to on top of her head. This has happened with me with a mask from my past. I made some little straps which connected the wandering strap to the bottom back strap. It kept the top strap at the back of my head where it was supposed to be and the bottom strap from riding so low that it would affect my neck bones. Win win and less leaks.

If you noticed leaks in her nightly data you might consider this itty bitty strap modification.

SleepyonMagnoliaSt wrote:She slept 10 hours last night with a pressure of 10 and her AHI? 0!!!! WOOT!!

Good to hear! Can't help but wonder, though, if she could be using lower pressure and still have good numbers. Way to go, none the less...you as a parent are providing the kind of support that she needs to do this and feel good about it. Glad to hear it.

Todzo wrote:

SleepyonMagnoliaSt wrote:Here's the kiddo asleep with her cpap!

May her friends never find this.

I note that the top "back" strap has ridden up to on top of her head. This has happened with me with a mask from my past. I made some little straps which connected the wandering strap to the bottom back strap. It kept the top strap at the back of my head where it was supposed to be and the bottom strap from riding so low that it would affect my neck bones. Win win and less leaks.

If you noticed leaks in her nightly data you might consider this itty bitty strap modification.

On this particular mask it's the top strap and the bottom that really hold it in place. I will keep this in mind for the future though! No leaks last night!

Now to survive older daughter's sleep study and pray she doesn't have sleep apnea too! Couldn't deal with TWO CPAP kiddos

I'm glad she did so well! Keep us posted about big sister too. Oh, and how's Mom doing?!

kaiasgram wrote:I'm glad she did so well! Keep us posted about big sister too. Oh, and how's Mom doing?!

Exhausted. I have to see a Cardiac Specialist on May 1 for a tilt table test and other monitoring. I still am sleeping like crap and never got to the bottom of my weird sleep study results.

I see my GP on the 10th and will request a new sleep study

SleepyonMagnoliaSt wrote:

kaiasgram wrote:I'm glad she did so well! Keep us posted about big sister too. Oh, and how's Mom doing?!

Exhausted. I have to see a Cardiac Specialist on May 1 for a tilt table test and other monitoring. I still am sleeping like crap and never got to the bottom of my weird sleep study results.

I see my GP on the 10th and will request a new sleep study

What a coincidence: I was wondering about your unresolved sleep issues last night while reading your posts and I was looking back at the history you described last year, including the PVCs. I thought to myself "I wonder if she ever had a tilt table test because some of her symptoms sound a little POTSy or dysautonomic to me." I had the tilt table test in 2000.

I'm so glad you're taking care of your own health too.

kaiasgram wrote:

SleepyonMagnoliaSt wrote:

kaiasgram wrote:I'm glad she did so well! Keep us posted about big sister too. Oh, and how's Mom doing?!

Exhausted. I have to see a Cardiac Specialist on May 1 for a tilt table test and other monitoring. I still am sleeping like crap and never got to the bottom of my weird sleep study results.

I see my GP on the 10th and will request a new sleep study

What a coincidence: I was wondering about your unresolved sleep issues last night while reading your posts and I was looking back at the history you described last year, including the PVCs. I thought to myself "I wonder if she ever had a tilt table test because some of her symptoms sound a little POTSy or dysautonomic to me." I had the tilt table test in 2000.

I'm so glad you're taking care of your own health too.

Yeah the Cardio I saw said he's 99% sure I have some form of dysautonomia so he referred me to the specialists. In the meantime I get compression hose and increase my salt intake