Thursday, January 6, 2011

Doctor updates

Well, we've had five appointments in three days, a total of 12 hours in waiting rooms, two sitters who canceled last minute, and lots and lots of screaming. I mean, what do these doctors expect making you wait an hour or two in the waiting room before you even get taken back to begin the "so what's Maggie's medical history" routine with the nurse? At every single appointment, by the time we actually saw the physician, I had been through every toy, every blanket, pointed out everything half-way exciting, and she was just done with it all. How in the world a doctor can give us his full attention with a one year screaming and bucking I don't know. I surely couldn't concentrate. I seriously thought about handing her to a receptionist so I could hear the doctor give us his opinions, but thought that might be inappropriate. If someone had come offered to take her off my hands for a few minutes, I gladly would have handed her over though!

Anyways, to cut to the chase - I am very overwhelmed. Pretty much every doctor had a different opinion about her torticollis. It seems that for every two doctors we go to, we get referred to one more. We have an appointmetn with a third surgeon in two weeks to see if he would recommend surgery.

By far, the neurosurgeon was the most helpful one of them all. However, before he would recommend any surgery to cut or stretch her neck muscle, he wants to do a 3D CT scan. They will use the CT scan to make a plastic mold of her spinal cord and skeleton. That way he can look at every bone perfectly, just to be sure that there is not even the slightest problem with her skeletal makeup or spinal cord. I so am glad he wants to be thorough.

She will have to go under anesthesia for the CT scan (which is scheduled for Jan. 25th) and while she is asleep he is going to stretch her neck all different ways to really determine what her range of motion is (it's hard to determine when she's awake because she is now so resistant to people touching her). He's also going to consult with a few other surgeons about Maggie's case before he decides any plan of treatment. He did say that we cannot let her continue on like this forever because it will eventually affect her spinal cord due to the imbalanced pressure on it. He seemed to really want to help her and so I hope that he means it!

Furthermore, he said that the fluid they found around the base of her spine is an indication of a congenital problem unrelated to her neck.  Maggie was screaming uncontrollably the whole time so I didn't really get the whole gist of the problem (thank goodness Justin was able to come), but if it not fixed she will have lifelong issues with her lower extremities. So he wants to do surgery in the next three months on that. He said if she has the surgery she most likely will be fine in the long run. Needless to say, despite his assurance that the surgery is minor compared to some other things he does, I still am very worried about it.

Once again, I am overwhelmed. Praying for guidance and wisdom as we move forward so that we can determine the best path for Maggie. I am feeling so sad, too. Sad at having to drag my child to all of these appointments and no one really can tell us what her future will be like.  Sad because as I am waiting in the neurosurgery waiting room yesterday, my neighbor comes down from the 6th floor and we both cry because her daughter (3 1/2 years old like ML) was diagnosed with leukemia that day. Her daughter's name is Margaret, too, and she is just the sweetest little girl if you can remember her in your prayers tonight. What a reminder of how grateful we need to be for all our children and their health. How life can change so fast.

No comments:

Post a Comment