"Everything sounds good. Let's get out of this ICU"

Alex is getting back to her normal sassy self and is telling the nurses to "get back to work." her Oxygen needs are decreasing significantly, even while she's sleeping (which has been the biggest problem so far).

So the decision has been made to move her out of the PICU and up the the regular patient floor. So we're not exactly checking out, but def moving up.

Thanks for all your prayers and support. Especially want to send thanks to everyone who's helping us watch Ryan and Alex during this time: Alicia, Kathleen, Cat, Marissa and the N- Lo's (and my mom for flying up to help next week). We couldn't do it without you.

Spa day

Alex is doing better today, although she's back on the steroids, so we're giving her some spa treatment to alleviate the 'roid rage.

up & down

happy girl awake

Alex was taken off the BiPAP this morning so we could get her up in a chair and moving around. She enjoyed this (considering she's been laying in bed for over two weeks) and her carbon dioxide level did come down some late morning.  She's doing great while awake but sleeping is a whole different story.  It's as if her little airway collapses when she falls asleep and air is not moving around the way it should. The BiPAP helps keep her airway open or at least that is what it's supposed to do.  They've been having issues finding a mask that fits well and finding settings that sync with her breathing to help her. If it's working against her own breathing, it can actually feel like it's suffocating her.  We are also starting a course of steroids which will hopefully help with inflammation but she does have the "behavior" side effects as they like to call it which really means she just goes crazy and is a mess.

The stress levels are at a high and seems we are moving in the wrong direction. The hard part is so many things are being pulled out of the hat with the hope that something will help but none of them are without consequence. Alex handles all that is thrown at her like a brave little soul that she is and hardly ever puts up a fight. When she was up in her chair the only thing she wanted was to go say hi to those outside the glass door. She really is so sweet even when she doesn't feel good.

big bad BiPAP

A nighttime struggle

It's just after midnight and I feel like I'm having déjà vu. Alex got moved to a different room in the PICU tonight so we are settling in again which reminded me of getting transferred here two weeks ago from the floor. Her carbon dioxide levels are climbing again just like last time and she's is on BiPAP again which was the case right before she got intubated.  It's a Tuesday, same as when she was admitted and so a lot of the same staff are working and we have the same nurse and respiratory therapist as we had the night she was transferred to ICU.  This definitely makes for a night of little sleep and worry of reintubation.

The docs think she is obstructing when she sleeps and although the secretions are thinning out, she still requires a ton of suctioning which could also be contributing to her struggle to breathe at night.   I'm not sure what this means for the morning and days to come but we should get more information during rounds in the morning.  Hopefully she just needs a little bit of extra support while sleeping and this doesn't necessarily mean we are taking a big step back or her condition is getting worse. She's been in good spirits and slowly weaning down on her oxygen requirement with reasonable carbon dioxide levels until the spike this evening. We'll keep you posted as we learn more.

Christmas Day

So we're gettin' through another day and Alex is an emotional roller coaster. She's on a steroid that makes her go from laughing to bawling to sleeping to crying again. It's awesome that she is able to laugh and talk in her little raspy voice, but unfortunately she's doing more crying than laughing. I really hate when she gets put on drugs with psychotic side effects. And half the time the drugs are just an attempt at treating some random symptom which they aren't even sure about. But I won't go on about that. I'm just happy she's off the ventilator.

We had a visitor today. Jenene came and brought presents, and Alex was really happy to see her. Hopefully Mommy will get to come up, but finding someone to watch Ryan on Christmas day is next to impossible, so we'll probably just have to wait until later tonight or tomorrow. So today's certainly bittersweet to say the least, but we really have a lot to be thankful for.

The act of spending the day together as a family opening gifts and whatnot has become what most people consider a proper Christmas, but it really is so much more than that. Traditionally it's a celebration of the birth of Christ and everything he stood for, whether you have a certain number of family members together or not. We have so many days that we get to spend together out of the year that being apart on this particular day is no really no big deal in the grand scheme. It's all about your attitude, and if there's one thing I've learned from Christ is humility. We don't "deserve" to be physically together on this particular day. We really have a great life and incredible love that we share, and that's more than enough to sustain us. The small sacrifice we're making for our unbelievably beautiful and strong daughter pales in comparison to the one Christ made by giving his entire life to show his love for humanity. Now that's a meaningful gift. And the more I think about that, the more I realize that this is what Christmas is really all about.

"Merry Christmas everybody"

Alex is just off the ventilator on Christmas Eve and wants to spread some Christmas joy with her newfound voice.

A breath of relief

She's off the vent now.