We had four well-spent hours at Shriner’s this morning, as we met with their pediatrician, a nurse practitioner, the surgeon, the anesthesiologist, dietitians, and care coordinators. I wrote an entire page of questions last night so that I wouldn’t forget one in the midst of emotion and detail today. After about half an hour the surgeon had answered all of them except one…where the surgery will be done. When I broached this questioned, he just looked at us squarely and simply said, “We’re doing it at Kap.” Oh, OK…end of discussion. But, we still wanted to know what brought him to that conclusion.
Abbie will be recovering in the PICU after coming out of surgery, so he feels that it just makes sense to do the surgery in the same place. We agree, although the decision to do the surgery at Kapiolani in no way reflects poorly on Shriner’s, for whom we have great respect and trust. After receiving many answers, and now better knowing what to expect when we see Abbie for the first time, I am grateful that we are going to the PICU. She will have a few lines in, and most likely a central line in her neck. She will probably remain on a ventilator through the first night. She will also be in a cast extending from the bottom of her ribs to her toes. I will be glad to be surrounded by a critical care staff that we know (and love). Caring for a sick child on a normal pediatric floor is very demanding for the parent, and I was unsure I would be able to stay on top of her pain during the first few days. The anesthesiologist had some very good ideas about this.
Just prior to the surgery Abbie will receive an epidural, which she will keep for a couple days. This will allow us to aggressively control her pain without drugging her into a stupor. As I’d suspected, the first 3-5 days are going to be very tough, pain-wise. I’ll be writing a gargantuan prayer list at the end of this update, and pain control will be very high on it.
I’ve been asked several times, “What exactly is going to be done?” Well, here’s the medicalese version: bilateral proximal femoral varus derotational osteotomies, right pelvic acetabuloplasty. Here’s the mom-translation: a surgery on both sides, removing a 1″ portion of each femur, turning the head of the femur into the proper rotation and reinserting into the hip socket, then securing it with a metal blade and using screws to connect each end of the femur at the cuts. On the right side they have to do some reconstruction of the acetabulum, using the bony material removed from each leg. This is the most complex part of the procedure, and will necessitate a second incision on the right side. I wanted to know where the incisions would be…from the “bump at the top of the leg” to about halfway to her knee on each side, and then from the middle of her groin, around the top of her hip bone to her back…that’s about when I stop asking those kind of questions!
We’re now very aware of the risks, complications, and potential challenges during recovery and beyond. We are realistic on one hand, but also very optimistic. After all, this is Abbie we are talking about. She was on her game today! She answered many of the pediatrician’s questions herself, using her switch, and even laughed when the surgeon was checking her belly. When the blood pressure cuff went on, she immediately looked right at it and scowled. I asked the surgeon what the critical factors for success were, and the only one that was really key to him was the health of the child going into the surgery. In his experience that is the major differentiator. Our girl is healthy as a horse, so that gave me a boost of confidence.
So, we are scheduled for next Tuesday, 9/18, at 1130. Abbie will probably be in the OR about 6 hours, so by the time we are settled in the PICU it will be late in the evening Hawaii time, and way after bedtime for everyone else. But, I will do my best to post timely updates and fresh prayer requests.
Speaking of prayer, here is the monster list:
1. Complete success with a perfect outcome; wisdom, skill, and an “in the zone day” for the surgery team.
2. Effective pain control, and a quick diminishing of pain as the days pass
3. Minimal blood loss (100cc expected) so that Abbie doesn’t need a transfusion.
4. No infections!
5. Quick recovery from the anesthesia with no complications.
6. Protection of her respiratory system; no events during surgery or recovery.
7. Rapid return of stomach and gut function so she can tolerate her normal diet.
8. No nerve damage. On the right side, her sciatic nerve will very much be “in the neighborhood” as they reconstruct her hip socket.
9. For necessary equipment and nursing staff to be in place for discharge.
10. For grace, peace, assurance and hope.
As I sat down to write this tonight, Ray’s email account was open, and seeing a name we are fond of I asked if I could open the message. Again the tears flowed as I read, and I want to share this with you:
This is Mia Letterie from Seattle. I have been thinking about Abby day and night. I have been praying for Abby as well as keeping up with Tiffany’s constant postings on prayforabby.org. I hope that her surgery goes well. Here I have attached a story that I have been meaning to send to you. In class last year we were asked to pick a hero. My first question was is it ok if our hero is younger than us. My teacher replied yes. The minute he said yes I knew who I was going to write about: Abby. So here is my final copy of the story. I have gotten everything from the website. I hope it is close to right and I hope that you enjoy reading it!
Well, Mia – your story was spot-on, especially the part about Abbie being a fighter. We loved it, and one day Abbie will read it for herself!! And you know what? My hero is younger than me, too!