Surgery is done!

We just saw Dr. Taylor who said everything went very well. He said the new bone grew in beautifully, and in fact it grew so well that it grew over the distractor screws and he had to chip it away to get the screws out. It took a bit longer to get out than he thought but he said that it all looked great and she should have no problems with pressure.

He gave us some preliminary information about the helmet she will need but suggested we get that taken care of closer to home, and it will be a few weeks before her incision heals enough for that next step.

Update

O ur family nurse came out to say all is going well so far, and Leah is asleep and with Dr. Taylor. Otherwise, she had no news to report. She told us we would go to the ICU next, while Dr. Taylor said she definitely would not go to the ICU so we have no idea which it is. We will find out soon...

The waiting room

I'm sitting in the surgery waiting room pretending to read the New Yorker but really watching the door for any emerging nurse...just like all the other parents in the room. When a nurse comes out everyone's head snaps up and we all watch her while she calls out names to give updates.

In between updates, all the parents are watching each other. I noticed that one way "veteran" parents recognize each other is through the coffee machine. It's an automated thing along the lines of a Keurig but much more complicated, with little valve bags that go into a tiny slot in the front of the machine that's hard to see. When a parent walks in and deftly slips a bag into the machine without a pause, it's clear that person has been through this before. It's a strange skill to have, and not really one that anyone wants...

In surgery

Our nurse just took Leah back into the OR. She was very sleepy and starting to look hungry but went with the nurse with no problem. She's just a few weeks too young to have any stranger anxiety yet which made the handoff much easier. The nurse actually said that they don't give babies any medicine before surgery until they are nine months old, but after that they have to give them a little sedation in order to get them away from their parents without too many tears!

We are headed to a different waiting room where we will check in, have some coffee and wait for updates.

Still waiting

Dr. Taylor has been in to see us and has explained the procedure again. It's always great to talk to him because he makes each procedure seem like it's very simple and no cause at all for concern...the equivalent of having her toenail clipped. He said the surgery will take only about 30 minutes, but the nurses said that doesn't count the time it takes to get her to sleep before the procedure or to wake her up afterwards. We are signing consents for blood transfusions but he said that may also be unnecessary this time. So overall it sounds like this morning will be faster and easier than it was last time.

Ready to roll!

All went well with check in and her initial measurements. We are just waiting for our surgeons now, and surgery will start.

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!