One step forward, two steps back

I'm writing this with Maddie sprawled in my lap. She's in that state of what I like to call "suspended animation." She's breathing slow and steady, as if she were asleep, but her eyes are only half closed and she is talking quietly to herself. It cracks me up.

Yesterday her nurses decided to get aggressive. They did some deep suctioning treatments (which Maddie predictably HATED) and took her nasal cannula off. The tape was irritating her skin and the cannula had rubbed a little spot under her nose raw. She wasn't totally off oxygen, though. We had "blow by" set up. It was just a tube with oxygen coming out of the end. If she started to de-sat, we would point the tube in her face. She did pretty well off the cannula. I'd say she was off for about six hours. Toward the end of that time, though, she was de-satting regularly, so it was back on the cannula for her.

Unfortunately, she hasn't been doing as well since then. The doctors and nurses have had to increase her oxygen to a full liter per minute. They are going to spend the day trying to figure out why she is needing more oxygen when, by now, she should need less. She'll probably have a chest x-ray. Her chest rattle, which had been diminishing the last few days, is back with a vengeance today. The nurses think it's a long shot that she'll be released at the beginning of the week. And, it's looking more and more like when she IS finally released, she'll be coming home on oxygen.

Even though she's working harder to breathe, Maddie is in good spirits. She's smiling and cooing and generally being pretty awesome. I can tell, though, she is getting bored. We're doing all we can to entertain her and give her some new experiences. Yesterday my friends Brianne and Lissa came by to visit, and Maddie LOVED seeing the new faces. Lissa brought a pretty balloon that Maddie loves to stare at, and a cute little puppy stuffed animal to guard her until she can be with her real puppy again.


misskuru said...

hey heather,

tara sent me an email with your blog link, and i just wanted to let you know that i will be praying for all of you! maddie is an absolute doll! i know that it's not easy to maintain the kind of courage, strength, and hope i read from your blog...but i'm sure everytime you see maddie, you get renewed. i pray that God continues to uphold you all.. and it sounds like you have learned a ton about medicine! heehee.

with love,
lindsay kurumada

Memphislis said...

More prayers for Maddie and her breathing. It is 10:30 pm where I am right now, and before I go to sleep, my prayer will be that she rests comfortably tonight and wakes able to breathe easier. I am also praying that her mama sleeps some, too.

Gemini Girl said...

Hi Heather- sending you prayers and love. Maddie will grow stronger with each new day. Life is full of set backs. One day you will look back at this time while maddie willbe home with you. She is a BEAUTIFUL little girl and I love that she's a flirt!

I too am doing the march for babies on 4/27 in nyc.
be strong!

Kristin.... said...

Thinking of you and sending along good wishes.

Tara said...

Prayers for you and baby Maddie.