Well, at least the decision is made. That's the best thing I can say about it...
We consulted via phone with Dr Fearon, the craniofacial specialist on Monday. He was very kind and very thorough. He said that in his opinion Max was definitely in the range of moderate trigonocephaly, (the triangular shape to his head when viewed from the top down) and in his opinion, there was no question whether or not another surgery was warranted. He said that although there's been no formal study that links abnormal skull shape to problems in the child's development, his opinion is that if there is pressure on one part of the brain, the brain will noe be able to develop properly. He also said that the "purely cosmetic" argument is completely false and made by surgeons who don't do enough craniofacial work, because an abnormal skull shape can affect a child's physical, intellectual and emotional growth.
So Wednesday, we went back to the hospital to meet with one of the surgeons here. When we met with him about four months ago, he told us that a second surgery was an option, but that it would be our choice whether or not to pursue it. When he saw Max Wednesday, he said almost the exact same thing that Dr. Fearon had said- that he was now in the moderate category and could benefit from significant correction. So after talking with this Dr, and peppering him with a million questions, we've decided to stay here in Salt Lake City and schedule the surgery with him sometime after the first of the year. He's done hundreds of these surgeries, and lots and lots of them have been secondary reconstructions, and Tom and I both feel like we can get really good care here without having to travel. Plus, we won't end up having to fight insurance companies, and can use our support system here. We'll have a surgery date soon, and we're expecting it to be early 2010.
Tom is totally on board now too. I think there's something about hearing it from the doctors that made him believe that I wasn't being completely crazy. It feels a lot better to have us on the same page.
Unfortunately, after we left the doctor's office, all I wanted to do was cry. I can't believe we have to go down this road again with my sweet boy. In some ways, its going to be so much more difficult this time around, because we already know what to expect. And I can't imagine what it will be like having a walking, talking toddler who is swollen and feeling miserable! Seriously. I have to stop myself, because if I think about it too much, I want to firebomb my original surgeon's office, and that's probably not a good idea. I look at photos of Max and realize we're making the right choice, but that sure doesn't make the prospect of an entire extra surgery any easier!
Your motherhood instincts are in full force; the fear, the hope, the anger, and the desire to protect are all normal. Sending a toddler into surgery is always scary, especially when they open up his head (I've been there for a different condition with mine). All I can guarantee is that the Lord hears every prayer and doesn't make us deal with it alone.
ReplyDeleteGlad you made a decision. I'll be sending lots of thought and prayers your way the next few months.
ReplyDeleteI'm so happy you both have come to the same decision! I'm sorry you'll have to go down the road of recovery again but just think of how much it'll help your sweet little boy once he's recovered! Good luck to you and your family!
ReplyDeleteI'm so sorry that you're having to go through this again,once is definetly ENOUGH! Our Family is praying for you and your family! I would so want to firebomb that Doctors office too! Hope everything goes well! Just to let you know that I have posted some of Holly's surgery before and afters if you want to take a peek.
ReplyDeleteOh, Stacy...hugs to you, Max, and the rest of your beautiful family. I had several surgeries as a child and never found anything more scary than facing health problems of my children. You are so brave. You'll be in my prayers! much luv, katrina
ReplyDeleteI just clicked through to your blog somehow and wanted to wish you luck. I know how hard it is to make these decisions, but you are right, if it is for his best good you just have to do it! Good luck and I will keep you in my thoughts.
ReplyDeleteMax is absolutely adorable, by the way. :)