Saturday, February 1, 2014

Distractor Removal Surgery is Monday

We finished our pre-op appointments in Philadelphia, which went very quickly now that we are seasoned patient parents at CHOP. After getting up at 4:30 am and driving 4+ hours in the car, we spent less than 45 minutes at CHOP then drove right back home again. It was a lot of driving, and seemed just a little unnecessary since the main purpose of the visit was to ensure that we understood the pre-op instructions they mailed to us and to take samples of Leah's blood to match her blood type for the transfusion, which they really already know from the last surgery. But it seemed like it would cause more issues, and more opportunity for confusion and error, if we tried to do some of that closer to home and send results there, so we just popped her in her car seat, filled up our travel mugs of coffee and headed down the road. Also, David agreed to a stop at IKEA on the way home, and people who know me well understand the significance of that! So, we jumped the last hurdle before her next surgery, and I got the cutest little MYNDIG plates out of the deal as well...

We didn't learn too much more about Monday's surgery than we knew before. By deciphering the medical codes on her stat sheet, we know this is a distractor removal that involves the Plastics team. The sheet did label the surgery "elective" which seems a little odd to me since we don't really feel like we are "choosing" anything...other than not having Leah live with a metal rod attached to her skull! We know our neurosurgeon will also be there to take charge of the part of the surgery that exposes Leah's skull. Essentially this is the same surgery that was performed in October, but since it's a removal rather than a placement it is less time consuming. The nurse said that the operating room was booked for 85 minutes for Leah's surgery, which is less than half the time it was booked for her first surgery, so that makes us very happy. That means that the incision may be a little bit shorter than it was the last time as well, and rather than going from ear to ear, it may stop short a few inches above her left ear. If that's the case, then the amount of tissue disturbed is less as well, and that means her swelling will be less, and possibly her left eye will not swell completely shut during the recovery. I'm hoping that's the case, because I think it will be much easier to soothe her if she can see at least a little bit while she's in the hospital.

As we left the appointment the nurse gave us instructions to call if Leah gets sick over the weekend because that will mean the surgery will be cancelled. I asked what her definition of "sick" is in this case, and it seems she's counting anything beyond a slightly stuffy nose--a fever, a cough, stuffiness, etc. So, we are going to really have to watch her this weekend. Of course, this morning Leah woke up at 5:30 am and seemed very upset, which is unlike her. She seemed tired but somehow in pain...very much like a baby who is just getting sick. I was able to get her back to sleep and she is still sleeping now, so perhaps it was just a moment of grouchiness and she will wake up her usual smiley self. If not, there's nothing we can really do about this anyway, so there's no point in worrying!

Our surgery is scheduled for 6:00 am on Monday, so we are leaving our other kids in the hands of our lovely friends, the Belangers and Bernards, and heading to Philly on Sunday evening. We'll miss watching the Superbowl with our little Manning fan at home, but we will be happy to take the next step towards having these surgeries behind us at last!

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