The first part of today was pretty rough. Her chest x-ray showed some congestion in the upper lobes of her lungs and after consulting with the surgeon and cardiologist, the ICU department MD ordered several therapies for today. They wanted her upright and mobile today to start clearing that congestion and to get the blood drained out of the area around her heart. She has a pretty big line there that drains the blood leaking around stitches and any residual blood from the surgery into a clear plastic vacuum bulb. They empty the bulb every hour and measure the output. When the amount of fluid coming out of that drain reduces to a certain level, they can remove the drain. That'll be nice because it bothers Maya to see it and removal of that drain will be another big step to us getting home.
The problem with doing all of this today is that this morning there were still about half the lines still in her. She was in pain and just not feeling well, but her stats were all good. In the pic below you can see the eight way port that feeds the central line into her clavicle vein (right at the neck and clavicle), but at this point only a couple of lines were still active as after the surgery the numbers of medicines being administered were reduced almost hourly:
We did get a couple of the lines out and then the catheter and got her up. She stood up, took a couple of steps, and sat on a little portable potty. She cried the whole time and was miserable. The potty experiment was not fruitful in any way.
Then, she sat in a chair for about and hour and a half and ate a little bit of chicken noodle soup. Any time we moved her around, she complained that she was sick at her stomach. When we put her back in bed, she threw up the noodles and the stuff that had been bothering her all along--probably still a result of the anesthesia. What finally set her off was putting medicines into that central line. Apparently it is somehow connected to the mouth and nose pretty directly because each time it is used, she complains of a bad taste in her mouth and smell in her nose. That, on top of feeling nauseous already, was enough to finally make her sick.
We had just got her settled back in when a very animated therapist named Kate came in. Maya usually reacts very negatively to folks like that, and right behind her came Pastor Jody from Oakwood. I thought, "Boy, this is not going to work out well."
This became Maya's rock star phase and boy was I wrong. She felt really special that the Big Guy on her campus, the Children's Pastor had come all the way over just to see her. He saw that the therapy ladies were waiting to work with Maya so we had a nice brief visit, he prayed with Maya, and he left us to it. Maya beamed. Then, the therapy lady, Kate was awesome. In just a few minutes it was clear that this lady was good at her job and very good with kids. They did some exercises and we got a glimpse of the real Maya (minus all but a couple of lines):
Just as they were finishing her therapy and Maya was already happy, the child services lady, Caley (sp?) from Methodist showed up and talked to Maya about what toys she wanted to play with and games or movies she could bring, etc. I see several games of Candy Land in our future and as I write this Scooby Doo is battling evil on the TV. Anyway, everyone just wanted a little piece of Maya and she ate it up!
Dr. Kuperschmid (surgeon) had two cases today so he brought them into ICU and stopped by. Dr. Brownlee (cardiologist) also came by for a visit. When they saw Maya, they both said that she looked like it was day 3, not day 2. So, it looks like they will move us to the surgical floor tomorrow. The next stop after that is home.
Not too long after the second pic was taken she got tired and is now sleeping. Shaggy and Scooby have just unmasked a farmer pretending to be a vampire to keep people from visiting some area attraction so he could get the land for his own use. I guess Maya had it figured out early on because she got bored and fell asleep. Zoiks!
Brandy's done really well with all this. She's slept about an hour and a half in the past 36 and is right where she needs to be when Maya needs her and does it all like it is easy when it is not. When one of us leaves to get food or something, Maya always says, "I want Daddy to go." In my heart I choose to take that as meaning, "Mommy is awesome and I want her to stay with me," and I'll just leave it at that.
So much more than this happens on a day like this with little victories and failures, but right now we are probably on schedule to go to the surgical floor tomorrow and her walking around on her own within 24 hours. Our nurse today is Sherry and even though I called her Terry the first half of the day and we now have a roommate (also a 4 year old girl), she's been 100% all day.
All in all, things are going very well and we couldn't ask for anything more.
1 week ago