Monday, July 11, 2011

The Card Appointment that Wasn't

Sorry for the lack of update from Friday's appointment, there just wasn't really anything to share.  I mean that in the sense of actual information provided from the appointment.  See - we were under the impression that all the medical staff knew and understood that we were going to sedate the little T-Rex for this upcoming appointment so we got some really pretty pictures during the echo without a fight.  A sign of how things were going to go down?  Olivia started to lose her grip just walking into the waiting room.  Her BP was off the charts because she was so hysterical and her pulse ox was over 10 points lower than it had been just a few days prior when we did an at home spot check.

Echo?  Yeah...lemme tell you about that.  They tried to start it sans sedation.  Why you ask?  Well apparently this was a case where the left hand didn't know what the right hand was doing and it wasn't charted that she really needed sedation.  And as our luck would have it sedation at Hope is a big deal, like as in the first Wednesday of every month and complete with an entire medical staff to monitor vitals for the sedation that's equivalent to pre-op.  Joy of joys, so after watching Olivia thrash and scream for what was literally the longest two and a half hours of my life, we left with the encouragement from the team of "at least you know if there was something wrong, she never would have had the energy to go on like she has been doing".  Oh gee thank you very much - can I just tell everyone where to shove it right now?

I would seriously take labor without an epidural any day of the week compared to watching her on Friday just to set some perspective.  The whole experience was totally traumatic from me even though the second we walked out of the waiting room, Little Miss Thing piped down and put on her best victory smile.  I have never dreaded the Fontan as much as I did on Friday.  To think of her growing bigger and stronger and all the more terrified of the staff as we go just made me so sad to envision her terrified and thrashing around in a bed post-op the next go around.

As a fellow heart mom friend and I discussed.  You love your unborn baby, you're scared and nervous when you hand them over for surgery, you shed tears at their bedside watching them on the ventilator with their eyes swollen shut at mere days old; but every day that passes, you form a greater bond with them. They're not just your baby, they're woven into every thread and fiber of your life as time passes.  The fact that I'm struggling with the thought of what's yet to come doesn't even do justice to the other fears and darkness lurking out there if something were to go wrong.

Back to Cardiology - August 3rd is the day.  Miss Liv will be an unhappy camper without food (her BFF) and drink restriction for the meds and then I will be escorting her down to Hope in what should be the best freakin pictures we ever get of that beautiful little ticker she's got in there.  Here's hoping right?


  1. Poor thing. I am surprised about the sedation...Hope gets sedated echos many times and we don't need a whole staff of people. Just a little versed up the nose and she is a calm, happy little girl. I still dread the appointments because they insist on trying first without sedation (they really are very silly) and we get 1/2 an hour of bad pictures. Then they have to order the Versed. Then we wait...and wait for it. Then she gets it and is amazing stuff for sure.

    I am glad you will be getting some great pictures soon.

  2. I am so sorry for the rough appointment. It is so hard to watch our kids like that. The fontan is tough, I am not going to lie! But, we are now 2.5 weeks home and I have a much happier kid who doesn't run out of breath running around or going upstairs. During the fontan, after the first week we started requesting atavan before every procedure to reduce anxiety and things got much better! And maybe get yourself a prescription before surgery day lol!