Results

Allie's pulmonary arteries were a mess and she had an abnormal reaction to the patch used in her original surgery which was contributing to the obstruction. The surgeon is pleased with the results right now but made no promises as to how long it will last her.  He was hopeful that further interventions (if needed) could be done in the cath lab. We will have frequent cardiology checks to see how her heart responds as she grows.

Right now she is hopefully getting off the ventilator and we will get to see her in ICU in about an hour.

Waiting to hear results

think they are finally finished as we were taken to a conference room to meet with the surgeon. Super long surgery. Hoping for good news.

Still waiting

all is going according to plan but still a few more hours to go. Thanks for all of your prayers!

Just took her back

They just took Allie for surgery. They gave her the woozy meds in her iv so this time it took about 2 minutes for her to get in her happy place and giggle. One of her surgical team members carried her back singing wheels on the bus and she was just fine.

Last night had lots of ups and downs. She was fearful of anyone doing anything she didn't immediately recognize such as stethoscope. She got an hour or two of sleep after dinner and then was woken for shift change. Then she just got giddy when she figured out I was sleeping beside her. She was just talking away in the dark with the only understandable words being "Mommy"  and "outside" with the sign.  Then she settled and slept okay when she wasn't getting checked.  She also had a nosebleed which was disturbing but went away eventually. Matt came this morning and we had a short time in the room before being wheeled down to pre-op. They will call us when the surgeon actually starts the procedure- an hour or so after they took her- and then every hour after. I am tired. But too nervous to sleep yet. Hoping to get a nap in here before too long. Still many days to go!!

Surviving day 1

 

This afternoon passed slowly, just trying to keep Allie happy and in her bed. It's a little like the plane rides with her being pretty tense and restless but at least we aren't as confined and she isn't crying too much except when someone comes to mess with her. She's loving the phone and a baby signing DVD from the library.  And eating. She ate so much today. She just fell asleep but will have to wake for her special surgery bath before too long. Her heart is really sick. The surgeon for tomorrow came by and he called her high pressure remarkable. Hopefully they are able to do enough tomorrow to last her a long time but at this point it seems uncertain. Thankful she is getting the help she needs. They will take her at 7 am but not start surgery till 9 or 10.  Hoping we can both rest ok tonight.

Getting settled

We are in a room for the night. Sweet girl is ok but serious. Getting ready to find some food. Surgery about 8:15 till about 1 tomorrow.

Lab results

Nothing too unexpected was found in the cath lab. Her pressures going out to her pulmonary valve were dangerously high so that if we had no intervention, eventually her heart would fail. There are a couple of areas that are just very small that are causing this so they will widen those tomorrow. She will have to be followed very closely to make sure they stay open as she grows and we could have more interventions in the future but hopefully just in the cath lab. Maybe even her valve replacement as a teen can be done in the lab by then. She goes to recovery room soon and we will get to see her and have to help her keep her leg very still for an hour or two so the place they went in doesn't start bleeding.