tag:blogger.com,1999:blog-8528513388509469290.post3821956125124380683..comments2024-03-16T00:08:34.632-06:00Comments on LIFE: Marriage, Kids, Dogs, Chickens, and ROHHAD Syndrome : ROHHAD sucksAnonymoushttp://www.blogger.com/profile/03258197733529368954noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-8528513388509469290.post-4369300389344239332010-12-28T21:53:48.290-07:002010-12-28T21:53:48.290-07:00Misty, I should send you some copies of Josh's...Misty, I should send you some copies of Josh's flow charts showing his O2, CO2 and heart rate. We have an end tidal CO2 monitor hooked up when he is on the ventilator. The numbers you showed aren't to me all that terrifying. Josh's CO2 and O2 numbers are all over the place. We actually make frequent adjustments to his ventilator settings based on the numbers on the monitors. The numbers change constantly. For example, Josh can start off with CO2 in the mid to upper 50s and it can go down to the low 30s in like an hour or so. If he gets a little bit congested, it can go back up within basically seconds to the 40s or 50s and as soon as he coughs and clears, it will be back in the 30s almost immediately. What I'm saying is I wouldn't panic over the numbers they are giving you. I wish I could calm your fears further, but I know just the thought of a possible respiratory failure is extremely frightening and nobody can possibly guarantee that won't happen to Haven. But just remember, nobody can really say it will happen, either, no matter what treatment she has or doesn't have. I pray for her to only get better and better as she grows - and it looks to me like she is doing just that.Vanessa Wootenhttps://www.blogger.com/profile/11101344778197963295noreply@blogger.comtag:blogger.com,1999:blog-8528513388509469290.post-39309579819922095072010-12-28T19:33:42.830-07:002010-12-28T19:33:42.830-07:00Dear Misty,
Thank you for the medical update on H...Dear Misty,<br /><br />Thank you for the medical update on Haven. I pray that whatever procedures that Haven has to have that they will help her.<br /><br />Still keeping Haven and family in prayer.<br /><br />With caring prayers,<br /><br />WyleneAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8528513388509469290.post-35787054762991309562010-12-28T08:16:32.320-07:002010-12-28T08:16:32.320-07:00Misty can I copy this and take it in to Nikki'...Misty can I copy this and take it in to Nikki's doctors please {I know you'll say yes} as I also get the "uneventful" talk too but this time I would like more. I have read up so much about ROHHAD now that I want some answers and I wanna know why Nikki's doctors think she doesn't have it anymore!<br />Oh and yes I've met alot of adults that say "oh I sleep with that or my husband sleeps with that". Nikki has slept with it since 2 Sep 08 and not much of a complaint except she hates it when she can't talk very loud with it on! :) I think they just accept it and know that they need it...I know Nikki does...God bless her!Anonymousnoreply@blogger.com