Installment 7 of Sierra's Tetralogy of Fallot surgery...April 9 , 1999 through the night
Midnight
Adam went to get some sleep. After a bit the doctor showed me her last xray. Sierra has some fluid building around her lungs. This is the kind of thing that can lead to a collapsed lung. They are treating it by giving her something to kick her kidneys into overdrive. So we're back to praying to the patron saint of pee. I couldn't decide if I should call Adam and was just crying a bit as I swabed her lips when the phone rang. It was Adam. We talked a little and I felt a little better. He's going to try to sleep so we can be fresh.
I think we've had 10 hours sleep between us both over the last 2 days.
2 am
Adam couldn't sleep so he came back. Sierra is putting out like a champ. I hope this means it's going to be okay and they won't have to put in a chest tube. Dr. Zuckerman, the intenive care doc, is catching a quick nap while things are quiet. We'll ask him how it looks when he comes back around.
3 am
Dr. Z (which is what they all call him here) says he thinks she sounds better, but we are still playing the waiting game. I convinced Adam to go to sleep, I'm still wired. Just wait till 6 am, I'll hit the wall hard.
She's breathing so hard - 60 to 70 times a minute. My poor little one...
5 am
She's still putting out more than she's taken in, but it's slowed down. Her eyes aren't as puffy. Her temp was up to 100 but they gave her a tylenol and it's back down.
I'm working on her embroidery project, the one I started when I got pregnant. Of course she was a little early so I didn't quite finish. It's a nice focus point for me to work on while I sit there, staring at her, not wanting to wake her up.
I'm getting sleepy. I'll hang another 30 minutes, then get Adam so I can crash for a little while.
1 pm
They ended up putting in a chest tube on Sierra's left side. The fluid had continued to build and build and they decided that she needed the relief. Immediately she seemed to stop breathing so shallowly.
Both Adam and I are exhausted. I got 2 hours sleep last night, he got maybe 2 or 3. I finally got Adam to go to the Ronald McDonald house. He just called. He went for a run and is now going to try to get 3 hours of sleep. Now that Christy is here I'm going to go too - right after I pump out (breastmilk) and have some lunch.
Her xrays are all up in the little viewing area, and seeing the fluid along side her lungs make it all seem so simple. Water in? Suck it out. Broken septem? H-E-B twist ties, the Dr. joked, pointing to the wires which looked like little letter "p"s tied around the bone.
She has seen me and Adam both. Not much crying yet. I know she's going to be scared and I wish I could do something, anything to change this room into a place she would see as safe. I mean stuffed animals will only take you so far.
They may have to add another chest tube to the other side where fluid is building around her lung. But ....
!!
I just got to breastfeed her! She ate great! I know they are still monitoring a million things (her calcium and potassium are a little low and that fluid is still a problem) but for a few minutes it was just me and Sierra.
Together again.
9:30 pm
Sierra is getting her first little sponge bath. She's a little uncomfortable, but not bad.
While Adam and I slept, Christy and Dad took care of her. They had some challenges. The CPT (chest physio therapy - or more apppropriatly chest pounding therapy) was too painful and they had to stop the therapy and get her some pain medication before going on.
And there is only one way to know it's too painful. She was crying.
They also had to contend with some bleeding and struggles with the nursing staff. They were exhausted afterwards. And that was just 4 hours, Christy noted.
We are waiting to get her xray back to see if she'll need another chest tube. But her breathing is so good, nice, deep breaths, not so rapid, I have a feeling it's taking care of itself.
I hope.
It's a roller coaster ride with the first big dip being the surgery but with many more following it. I can't imagine how some of the other parents in here have done it - those that have been here for weeks. I've had about 10 hours of sleep in 3 days and feel like we've done this for a year.
Adam said it will be nice to get back to a normal life like what we had before. I told him it was going to be even better since we don't have this hanging over our heads. It's been like there was a huge 18 wheeler closing in on us and it finally went past. There are still some big trucks on the road, but those will be cake. I mean can you imagine what it'll be like when she breaks an arm or cuts her leg or some other childhood injury? Adam laughed "It'll be like nothing after this."
No kidding.
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