Libby's Surgery

This is NOT a picture of Libby, it is another little girl that I follow on carepages, but this is what Libby looks like in the CVICU. This is pretty much how she is hooked up (+/-) some tubes and wires, and she is in a bed that has metal rails on the sides and her arms are tied at the wrists to it. And, her breathing tube was in her nose instead of her mouth like this sweet girl in the picture. But, yeah, that looks very similar to what Libby looks like.

Libby did great during her Fontan surgery. The word that her mother used was "seamless"! It was such a stressful day, and it was weird how it effected all of us. Imagine this, we are all driving to the hospital that morning...through Houston in unfamiliar traffic. We get out in the parking garage and walk over to Libby's van where they are unloading. Libby has tears in her eyes and from the redness in her face you can see that she has been crying. She says "Jenfer, whatcha doing?" I reminded her that I had said I would come and she says "oh!". She gets in her stoller and we all look like pack mules heading up to the 17th floor. In the elevator, she is laughing and being silly with her grandmother and me. You can see the strain in her parents' eyes. We head to the waiting room with her and she is excited to see her paternal grandparents there. She gets to greet them and we all drop our stuff into place for the day and she is called back to go to pre-op....what? That fast? So, mom and dad go up with her and we all just tell her goodbye....you can't help but wonder if it might be for the last time. My stomach was churning and my head started hurting. We all take a deep breath. We are all wearing coordination "Team Libby" shirts and we take up our section in the waiting room. More supporters show up. Not too long later Eric and Gracie return and they both look terrible. Teary eyed red faced, Gracie tells us "that didn't go well" she then tells us that Libby wasn't sedating with the drugs that they gave her to relax before she was taken back, so she was screaming (as best she could with a paralyzed vocal chord) she was saying "come on mommy, come on" , "mommmeeeee" and she was motioning for Gracie to come....poor Gracie.

About 20 minutes later, a guy that was sitting at the reception desk, who was from a foreign country and had a THICK accent, comes in and tells Gracie and Eric that the DOCTOR is coming down to see them....what??? DOCTOR??? isn't he supposed to be OPERATING??!!!??? We all got tense...turns out that he was mistaken, it was supposed to be a NURSE coming, and then, oops, actually the doctor hadn't planned to send anyone down just yet...that was just the beginning of a LONG day of waiting. They would come down and update every two hours. There was one other time that the foreign guy mistaking said DOCTOR instead of nurser and caused us all to panic because there was no way that surgery was complete....needless to say to those of you that KNOW me, I couldn't let that go and I later in the day talk to someone "more in charge" and let her know what had happened TWICE and that I think that it is important for these people to know that the terminology is VERY important. Gracie told me later that she thought that they were coming to tell her that Libby was gone, and all she could think about was how she was going to come out and face all of us.....how awful! (you have to imagine this...they are in a small conference room with the door closed and they have to come out each time and share the update with all of us STRESS!!!!)

We were all talking about how we were so stressed that we couldn't read. It was like you couldn't comprehend words on the page...it was weird! I stared blankly at a couple of magazines, and I couldn't remember anything that I had read, so I just gave up. And when they would call Gracie and Eric out for updates, I would feel like I was going to throw up!!! It was a long, hard day. And, you lose concept of time while you are there...weird.

Libby did well, with only a little complication at the end of the procedure where her heart had rhythm issues and it was beating REALLY fast but not "squeezing" appropriately. This medical team was prepared for this since she has done this in the past with her previous surgeries. It was such confirmation that Libby is in the right place being in Houston as opposed to here. They were able to extubate Libby last night ---finally, and she didn't have to stay on the life support system any after surgery. All seems to be going well. It was so neat to see her with pink toes and fingers. She looked really good. It was hard to see her strapped down and all of the tubes and wires, but it was also amazing to see her that way...what a MIRACLE!!!!!