Monday 7:30pm
Start convincing Jessica to go to sleep in prep for busy day today.
Monday 8pm
In bed, nearly asleep.
Monday 9pm
I look at my watch and say, "it would be really great to go up to sleep now, I would feel great tomorrow."
Monday 10:30pm
Time I actually get off couch.
Monday 10:31pm
Unfortunately wake up Alexis when trying to put her CPAP on. She wakes up screaming, very unhappy about being awake.
Monday 11:15pm
Shut off TV upstairs, Alexis is falling back asleep but not fully asleep (not asleep enough for CPAP).
Text Matt and tell him he may have to CPAP Alexis because I'll be sleeping.
Monday 11:30pm
I'm asleep.
Tuesday 12:15am
Alexis asleep but snoring/apnea (she has sleep apnea - so I have to wake up enough to put on her CPAP).
Tuesday 2am
Matt returns home (see facebook page for pictures from the Patriots football game)
Tuesday 5:10am
I wake up in a panic. I think the alarm clock says 6:10am. I can not read my alarm clock numbers without my glasses on. It was 5:10am, WONDERFUL. I woke up 5 mins before my alarm clock. I get up, eat breakfast (since I won't be able to eat in front of Jessica when she wakes up).
Tuesday 5:30am
Matt awake, to help Jessica up. Jessica ready to go in super-fast time, she is wearing her pajamas to the hospital.
Tuesday 6:40am
We arrive in record speed at the hospital, less traffic than Monday since we left 30mins earlier.
Tuesday 8:30am
They call Jessica's name and we go back (note that we were told to arrive at 7:15am.... growl)
Tuesday 9:30am
Dr comes out to talk to me (Matt at home to get Alexis on the school bus and then to avoid traffic). Dr very very uncomfortable with proceeding with catheterization because he isn't sure that it can fix what he sees on TEE (ultrasound that goes down her throat). We call Matt and Dr talks to Matt. We agree that we want Dr to try to fix the ASD with catheterization because it's the least impact on Jessica's health.
Tuesday 11am
Dr comes back out to talk. I had just found out where Matt was, in the hospital lobby. Send him quickly up to 6 South for Dr consult. Dr goes through what he tried to do, but said he was not comfortable at all with leaving in a device - that it had the potential to cause the outside wall of her heart to rupture (at some point in the future, he was afraid) and that it would still leave a sizable hole in her heart which could deteriorate over time. We agree that the only thing to be done next is to decide when to schedule open heart surgery.
Tuesday 12pm
We can go back to see Jessica in recovery. Jessica reacts to versed / sedation drugs "uniquely". We only know how Alexis reacts to meds and that is very peacefully. Too peacefully. Alexis on sedation drugs is sometimes a little too peacefully (she forgets to breathe, too relaxed). Jessica is the flip side, too agitated. It took both me and Matt to try to comfort her and keep her consoled. Once she could have a popsicle she was much better :-) Nothing convinces me or Jessica to be happier than some sweets :)
Tuesday 1pm
Agitation gone, but Jessica wants to wiggle. Me and Matt are assigned to "no-wiggle" patrol. We said "Jessica keep your legs still about 10,000 times" (EACH). She was obviously feeling fine.
Tuesday 3pm
We can go for a walk. We can go to the car. We can leave the hospital. Thankfully we didn't need to stay overnight because Jessica didn't have a device inserted :( We would have liked to have a device inserted and not leave the hospital knowing that Jessica needs open heart surgery to repair her ASD.
But no matter what, Jessica did great with the surgery, she showed how brave she is, they named her the "Mayor" because she was talking to EVERYONE in the hospital. We don't like the idea of open heart surgery, but who does? We are in a great place (Boston), we are in great hands (Boston doctors) and we are going to do just fine trusting them with Jessica.
Thanks for all of your thoughts, prayers and concern over the past couple of days,
Catherine
Jessica getting ready. So CUTE!
PS. The attached video is about ASD repairs via catheterization (what we tried to do today for Jessica):
http://www.youtube.com/watch?v=kPfH-D2O9mA
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