Note: If you are on the board, please forgive me for restating what I posted in Sisters. I'm still just utterly exhausted and don't have the mental energy to re-hash all of this. I'm just going to cut and paste the post from there below.
Since we managed to talk them out of a clinic appointment first, we left around 8:30 on Tuesday. We took our time getting to Birmingham, and before we left, I GoogleMapped directions to the Irondale Cafe (the "Whistle Stop Cafe" that is the root of the movie Fried Green Tomatoes). We went there directly, and had a great dinner. Jack FLIPPED over the trains and kept signing "train" and saying "choo choo." It was the highlight of our trip, for sure.
We checked into the hotel and ran to SuperTarget for some provisions. I always try to get him to eat as much as humanly possible before he is NPO at midnight. He refused the apples, refused the banana, ate a handful of cereal - just nothing of substance. He nursed twice and went to sleep. I waited up until midnight (one trip in Chicago, I MISSED his last nursing and it was awful - engorged, leaking, you name it). We were pretty amped up and couldn't fall asleep in the hotel.
He woke up at 1:30 and screamed. And screamed. And screamed. He thrashed around, hitting his head against the headboard, and screamed louder. He signed "milk" and "please" and said, "pees?" over and over again. I wanted to cry. I quietly reminded him that we had a cast tomorrow and no milky, but he wasn't having it. He finally passed out again 45 minutes later, only to wake up and do the same thing at 3. I don't think we slept again. John finally got up with him at 4:30 - glad to know that once we were up, the night was over. I got up at 5 and got dressed and we headed out the door - running on nothing but adrenaline.
We got to the hospital and the check-in waiting room was already full. We were ten minutes late, but I could have cared less at that point. Jack did well once we got there, except for the times when someone would come into the room. The DVD player in the room was broken, so he couldn't watch his movies. I swear it was 90° in the hospital, too. We were sooo tired. Went through the anesthesia screening, then the history, yadda yadda. By 7 they gave him the versed and it seemed to work this time. In Chicago he almost falls asleep, but in Birmingham, we have to carry him down to the OR and pass him off. So, he's hysterical every time, no matter what. Dad took him this time.
One person has to remain in the room at all times, so when John got back he went to the cafeteria to get us some food (we don't eat when Jack can't eat). I scarfed a bagel and we waited about a half hour until Dr. K came in.
He showed us the out of cast x-rays from cast 4. This is the starting point. The last cast had only corrected 2°. He went from 38° out of cast to 22° in cast - and once that was removed, he was back up to 36°. Defeat.
He said the spine is very rigid. When he presses on the apex of the curve, he can usually straighten it. However, in Jack's case, he cannot. He presses on that C and the WHOLE spine shifts over. Obviously, this could create a compensatory curve above and below it and royally screw up his back. So, he did what he could, but isn't very optimistic. I still don't have Cast #5's in-cast numbers.
After this cast, he will do x-rays and see where we are. If he hasn't gotten much correction (below that 36° number) we will move into a brace - that means it is all he can correct by casting and his spine is too rigid and his growth has slowed too much to achieve any more correction.
We've know this was a possibility. But, hearing that it's here already is a bit of a shock. We thought we'd get down to the 20s at most. However, we are looking at a 50% correction. That's huge. He is no longer a "surgical curve" - that's huge. But, 36° is huge, too.
Next appointment is at the end of May. We will go down for a clinic visit and get x-rays and the brace guy will be there, too, just in case. If we HAVE seen correction, we will do another cast at 6AM the next morning. If there isn't any correction (or not significant) we will move into a brace.
His surgeon uses Providence braces, which are more aggressive and push against the curve in the opposite direction. They cannot be worn during the day because you can't stand in them, we were told, but they work much better. And, he would have the chance to strengthen those trunk muscles during the day, which would be fantastic. However, he also has a chance of relapse. The rapid period of growth slows significantly between 2-5, and virtually stops from 5-10. He said you can breathe easier between 5-10. However, DH is 6'10" and grew steadily from like 3rd grade until college. We are going to have to watch Jack closely.
So, lots of mixed feelings right now - we would be thrilled to not see another cast. We would only have to go to Birmingham once a year for brace checks. That's good. But, no monitoring scares me. Not getting below 36° concerns me.
While I was uploading pictures from our trip, I got an email from T in Dr. K's office. The in-cast number was only 30°. Clearly his spine has become significantly more rigid since the last cast went down to 22°. She gave us the name and number of a local orthotist who does Providence Braces here in Webster. We are still welcome to go down there for bracing, but she suggested that since we will have a lifetime of commitment with brace checks and growth adjustments, she suggested we may want to stay with someone local. We are going to take some time to process all of that and try to make a decision.
Some happy things to end this with - pictures.
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