We just returned yesterday from Makenna's third cast at Shriner's in Chicago. We are very pleased with the progress she's made. She is currently 14* out of cast!!! That's an improvement of 6* since the last cast. Dr. S says if she continues to show this much progress, one or two more casts and we'll move to bracing! That's wonderful news as we head into the long, hot summer. It makes it all seem worth it.
Makenna continues to amaze me with her resilient attitude. She was actually cheering in the car on the way to Chicago that she was going to get her "BRAND NEW HUG MACHINE"!!!!! She was so excited and looking forward to the trip to the hospital to see old friends, meet new ones and see Gwen (the nurse), Tom (the x-ray guy), and Robert (the cast man). It was a good thing she had this attitude... because with the amount of patience and calm required to make it through cast day, it was definately needed.
I thought I would give you all a glimpse into what happens on cast day. The cast that's applied is a fiberglass cast, just like when you break your arm. It doesn't come off and you can't get it wet. Although the material is the same as an ordinary cast, the process of application is much different. In order to gain correction and "retrain" the spine to grow straight, pressure must be applied to manipulate the spine during application. Scoliosis is a 3 dimensional deformity. In it's full function the human spine is designed to bend three ways: forward and backward, right to left and twist. Scoliosis effects all three of these planes and unless the treatment is designed to address all three of these planes - it will only hold the curent growth of the curve. The casting procedure that Makenna undergoes addresses the 3 dimensions of scoliosis. It's formal name is Early Treatment using EDF (elongation, derotation, and flexion). In order to achieve such great results a special table is needed and of course the doctors are specially trained in it's application. You can see a video on youtube that describes the procedure: http://www.youtube.com/watch?v=zuQE77EGgNU. Because the procedure is done with the kids in traction and require manipulation of the spine, they are put under anesthesia. For this reason, it is considered a surgical procedure and is scheduled as such.... so here's how the day goes
8:00 am - We arrive at our scheduled time. It's usually 6 am, but this time we were told to arrive at 8 am. According to instructions, Makenna has not had any food or drink since midnight. We report to our outpatient room; we always have a roommate. Thanks to the wonderful world of the internet, I actually know many of the families that cast in Chicago. So having a roommate is like bunking with a buddy. The families kind of mingle in and out of their own rooms catching up and the kids get a chance to hang out together. Yesterday in Chicago, there were six kids getting casts and I knew three of the other families. That connection makes casting day soooo much easier!
Once we arrive, we are registered and our great nurse takes the vitals - height, weight and blood pressure. We get x-rays - a first glimpse at what kind of day it's going to be. Eveything is digital, so Dave usually helps with Makenna and I stay back in the booth with the x-ray tech. You can immediately see her x-ray. They cannot tell you anything about the x-ray, but they are always very kind and let you take a really long, good look at them. When we return to our room, a resident orthopedist comes in to go over the procedure, check her skin answer any questions and go over a brief medical history. Then the anesthesiologist comes in to go over the procedure, check her skin, answer any questions and go over a brief medical history - this time with everything vital for anesthesia.
The waiting during this time is usually easy. We can wander freely throughout the hospital (within reason!), mingle with the other kids. look at fish, play games, etc.
10:00 am - Makenna is taken to pre-op. We can go with her but we have to put on a gown, hair net and shoe covers. Here they will put her in the t-shirt that is under the cast, give her the versed and wait for it to kick in. We usually watch movies or look at books, but the waiting here is the hardest. Makenna still hasn't had any food or drink and isn't groggy enough and doesn't have the distraction of the room to forget about the apple juice either!!! But sure enough the versed kicks in and she is pretty chill.
11:00 am - They take Makenna back for her procedure. The procedure itself doesn't take very long. Dave and I grab a bite to eat and wait some more...
11:45 am - Dr. S and his nurse have finished the procedure and come out to tell us how it went. This is the moment of truth... And he's very pleased this time :) And so are we. He is encouraged by her progress and doesn't think we'll be at it much longer. So, good news for us on this day. But every report for every family is different. And the leadup and anticipation to that one moment all morning, is emotional draining. No matter how hard you try not to, you've got a gut reaction to what you think you saw on the x-ray, or how you thought her back looked out of cast, or what your friends and family said, or that you really want good news or that you fear for the worse. You can't let all of that go.... it just lingers in your head. And you've got nothing else to do for 4 hours, but go over it and over it in your head.... Well, except for diversions of comparing spines with other moms on color wonder paper!
12:30 pm - Makenna comes out of recovery. She is crying, but not as hysterical as usual. She absolutely hates the IV. She spends about 30 minutes screaming inconsolably about the IV. If she'd just slow down and have some apple juice, they could take the IV out. But, alas, she's 3. And refuses to listen to logic :) So we let her melt down continue, until she finally gets it -
1:00 pm - Now the fun starts. We need to begin adjusting and taping the cast. This is the first time we've had to make any adjustments to the cast, so the cast saw was a new addition for us. The needed to trim under her neck and under her arms. She was OK with it, not super thrilled, but not thrashing around either. After we made to adjustments, we began padding the edges and taping the t-shirt to the outside edge of the cast. This process takes about 45 minutes.
2:30 - We say our goodbyes to Gwen (the nurse) as she walks us to our car. We are on our way home with good news. This feeling as we leave is always different based on how the day went, but the familiarity with Gwen walking us to the car and taking such good care of our child all day is a comfort.
So, it's 2:30 Chicago time, which means it's 3:30 Indy time. Traffic is usually a nighmare no matter what time we try to leave Chicago. Makenna usually sleeps most of the way home, as do I - thank you Dave!!! Last night we arrived at home, after picking Abby up, at 8:00 pm.
It is a long day.