Tuesday, July 21, 2009


So I left the nurse with instructions last night to call if anything happened. You know what I found out this morning? That he just didn't want to wake me up! I can see maybe not wanting to wake me up at 3 in the morning but it was 6 for hell sakes!!! Its not like 6 was going to cause me to lose a lot of sleep! Brynlee ended up desating after her treatment. They had to take her oxygen from 1 liter back to 4 and up her bipap settings. They are scaring the dickens out of her when they do her cough assists, which causes her to desat. If she has another night like last night tonight, I am going to demand that they find me a room! This is rediculous! During the day when I am there she does great which is because I do her treatments. The RT's dont know how to do a cough assist without pushing her face through the bed, Thats how hard they push! I'm totally serious about this, are you with me other SMA moms? I promise they can get a good seal without making her head fall off, ya know? So by the time I left her bipap settings were down to normal and her oxygen was at 3 which was fine with me because they will probably end up going up on her oxygen again since they don't know how to calm down a freaked out little girl! I will tell you why I know that she is just scared of them all. Brynlee was sating at 91% today. I took off her mask to wash her face and her oxygen went up to 100 and 99. It was crazy. When I put the mask back on she went down to 92% and hung out there. But the minute an RT is around and we take the mask off she drops. I wish that I could just do her treatments myself with no RT around. Anyways there is my fun little rant about the PICU. We will see what day 6 brings us. Thanks for all the well wishes everybody, we sure are using them about now!


Jill Olson said...

that is so crazy. u would think that they would be a little more careful with kids. it does not matter the situation. they are there to take care of them not scare them. Tara are so good with Brynlee. she has made it as far as she had with all of your and marks love. I hope that she is out of the hospital and back at home where u can take care of her as soon as possible. I know that you will all sleep better.

Love you guyz

Whit, Lindsey, and Jonas said...

Oh I know, I know!! I finally decided that I would sleep on the chair in the room because Jonas would not do good when he was by himself. Sucks. I have such a hard time with the fact that some of the RT's don't have a clue what they are doing. It makes me want to go teach a class myself for them. They do like to push their little heads into the bed!!! Makes me insane!
Wishing the best for you guys! Hang in there.

Melodie said...

oh man.. poor brynlee. She probably starts sweatin' when she sees them walk toward her bed. SO so sorry that she is in the hospital. I hope tonight goes better with you staying w/ her. We are thinking about her and you and Mark every day and praying that she gets to come home soon. She looks absolutley adorable in her new pink wheels. just like a princess :)