Monday, August 2, 2010
Sleep Study CPAP Titron 7/29/2010
We had a third sleep study for Brianna on 7/29/10. I dreaded this day for months, I have to admit I rescheduled, I cancelled, I didnt show until finally it came down to WE HAVE to do it... we cant put a pause in Brianna's plan of care. So we went through with it. Remembering the last study in December 2009, I felt sick to my stomach with the last one Brianna had several of her ALTE spells (apperant life threatning events where she stops breathing and faints) and it was very difficult to get her to sleep at all, she woke up several of times. So I thought this one would more or less be the same if not worse since she is older and gets what is going on more. Well, Princess Brianna proved me wrong... yet again (and I say that with love and quite happy about it).
We packed some dolls and the beloved Mickey Mouse and a dolly that played music and had a night light... we packed big sister Haileys stuff and took her to my moms house. (Hailey of course didnt mind this at all since she loves going to Grandma and Titos "abuelitos" house and hang out with auntie Jessie).
So after dropping off H-H at my moms we headed to CHOC Childrens hospital (oh yeah in Nana's van because mommy "I" lost my car key its been now 5 days and I still dont find it so I have to get a locksmith to make me a key for our Honda with an immobilizer yay extra expense that was not expected right? NOT) any way so we headed to the hospital. Before checking in we allowed Brianna to play with the BIG BLUE cement balls that they have at the front entrance of the hospital with CHOCO Bear on them. Brie loooooooooved them! She was determined to get a kiss from the painted CHOCO bear on one of the balls! She kept putting her cheek to it and hugging it, it was ADORABLE! She ran back and forth from ball to ball then ran in to the lobby to see the big Bear at the entrance.
Brie stayed with daddy and I went in to do the check in paper work. We walked down to the basement to the diagnostics lab and we were situated in a room (they wanted Daddy to leave and only Brie and I to stay but I was so convinced that it was going to get so bad that I couldnt do it alone so I made them allow the hubby to stay).
I was trying to kill time, I tube fed Brie played with her until finally at around 9:30 I asked them to come hook her all up.
Hook up was HORRIBLE (BUT Brianna made me SUPER PROUD, she did not have an episode!!!! HORRAY) She cried so much her eyes were puffy and red, her asthma kicked in and she was wheezing terribly she was gagging and choking poor baby would probably have puked if it wasnt for the fonduplication that she has. God helped us through the worst part which was putting it all on! How do they expect a child to sleep with all of this crap?
Since her last sleep study was outdated to try CPAP right off the back we decided we would do a half and half (first half regular sleep study, other half CPAP titron).
Good girl fell asleep at 10:34p.m WOW is right! I thought for sure she would wake up within the hour! NOPE she didnt, she was sooooooooooooooooooooooooooooooooooooooooooooooooooooo goood! I was and am very proud of her! by 12:30ish the lady doing the study came in and told us that she had not had any apnea yet so that if she didnt have any apneas by 2am that we wouldnt do the CPAP after all. By 2 am she told us she had two (can you believe that?!) only two apneas and that they were short and self resolved. That if she continued that way then we wouldnt do the CPAP. WELL OF COURSE>>>> YOU GUESSED IT!!!!
Around 2:20am she started having apneas a few back to back (she had finally fallen into deep sleep and she was dreaming sooo she started having apneas, a few central ones and a few obstructive ones. She said that in her opinion they werent enough or long enough for CPAP but since the DR ordered it she said it was up to me if we wanted to start CPAP.
Well by this time its 2:50am the study is over in 2 hours... by the time we WAKE her up (because yes my little baby was still sleeping all hooked up to all of this) and then try to get her to keep the mask on and then try to get her to sleep it was going to be time to go home, they arent allowed to go past 5 am so if our pulmonary still wants a CPAP study then we will have to do yet a 4th study with all night BiPap and CPAP but for what the lady that did the test was saying she is showing improvement and doesnt think she will end up being a candidate for CPAP BUT that is of course up to our pulmonary, so we will check in with her in 2 weeks when all results are sent to her.
Taking everything off was a huge pain too, she cried, choked, gagged, her eyes were puffy and red but she still didnt have a spell/episode (daddy and I coudnt be more proud).
She was so so happy to be leaving the hospital she cuddled with me on the seat while we waited for the transport bus to take us to the parking structure. She sweetly leaned up against me sucking on her beloved pacifier :)
Will post what our pulmonary says in a couple weeks.