If you ever have a doubt.....

It's really been weighing on me lately the differences that we've recently experienced in medical care for Haley & Mason. Deciding to get a second opinion was easy, actually moving care to Seattle wasn't. The decision was one that would affect us emotionally, physically, financially, affected Collin, my extended family, and is one of a long term comittment, for everyone involved. We've made a lot of moves in medical care these last 4 1/2 years and been faced with a lot of tough choices. Deciphering medical jargon is not easy and breaking relationships with doctors that you've entrusted your kids future with isn't easy either. We started in KC, were sent to St. Louis, consulted with Seattle who at the time said we were in excellent hands with St. Louis, and in the end..........we should have just stuck with Seattle from the beginning.

It makes me second guess our decisions at that time and ask myself over & over "what if". What if we had taken Haley to Seattle from the get go? I know she's doing great now, but it's hard not to imagine how much better she might be doing. Would she have lost all her range in her hip had that surgery been done sooner with a different approach? Would she dealing with the extreme issues with her feet? Going to Seattle for a second opinion on Mason was honestly spur of the moment, I woke up one day and basically said "this is what we're doing, I don't know how, but we are". I had this nagging doubt in the pit of my stomach that we just weren't on the right path for him. And day after day of listening to Haley complain of pain, I knew that things just weren't right there. I just didn't know how right I was until we decided to take the plunge. We didn't learn everything the first visit, it was a pretty generalized evaluation. It wasn't until we decided to move forward and went to Seattle for the second time that we started really figuring things out. We learn something new every time we talk to them and I sit dumbfounded.

Doctor A (from KC) plans for blood transfusion for Haley's hip surgery. We have to get her blood drawn to make sure the right type is available. Doctor B (Seattle) looks at us like we have two heads when we mention blood transfusion as "it is not a large blood loss surgery and they have not done a transfusion for this type surgery in years" Even with having major foot surgery & his knee done in addition to the hip, Mason still did not need a transfusion.

Doctor A inserts large 'L' shaped plate in Haley's hip with 3 large screws that will need to be removed down the road. You can feel the lump in her thigh. Doctor B inserts small flat plate with 2 tiny screws that will grow right into the bone and become a part of it.

Doctor A says we need to wait 2-3 years to have hip surgery as the socket is too small. It doesn't grow so donor bone is used to create the socket. Doctor B says it should have been done before age 1 year so it could be done much less invasively, then uses Mason's own bone to create the socket from his femur osteotomy.

Doctor A says Haley's hip is looking great and no blood supply issues. One week later, Doctor B, as well as another doctor in the practice, immediately look at her x-rays and note blood supply issues just by looking at the bone growth pattern of the femur head......which is noticable to the untrained eye, I had just been questioning it before the doc walked in.

Doctor A (St. Louis now) states that Mason should not have knee surgery for at least another 2-3 years, school age. Doctor B (still Seattle) sees that Mason is ready to move and has a good chance of walking if he was in a position to do so. That he needs surgery sooner than later to give him the best chance at this.

Doctor A says he just needs to go in on Haley's feet and repin the talus bone back into place, same surgery as before. Doctor B examines her feet and asks "did he look at her feet?" Stating they are very stiff and need bony removal. He finds the bones fused.......pinning the talus bone is not even an option. I hate to think what would have happened in the OR in St. Louis if her foot was opened to the mess they were in.

Doctor A states that the tendons need lengthening/released and that is causing Haley's outtoeing. Doctor B releases everything in her foot and it does not even budge, not one change.

Doctor A is ready to leave Mason's feet as they are until he starts complaining of pain. Doctor B realizes that his feet will be as bad as Haley's if we do nothing. He ends up doing a complete release and realizes that his foot still wants to turn out some. To get a correction that will last, he removes the navicular. All went easily, because it was done NOW, not later.

Doctor A (KC) reviews spinal x-rays of Mason and determines he is progressing, needing bracing. X-rays are taken with him sitting on a stool, squirming, not sitting up straight, etc. Doctor B explains the need for traction x-rays to determine the flexibility of the curve and the progression of the rigid curve, which is not acheived by telling a two year to "sit still". Bracing is not needed yet. We need to determine if he really is progressing or if his curve was exagerated by the way he was sitting, trying to balance himself on a stool.

It amazes me the difference in doctors. I don't see how things can be so drastically different in the evaluation of the same patient. As parents, we put our trust in them that they know what they are talking about and that procedures are being done at their very best. I thank God for giving me those "doubts" and nudges to seek out better options. I wish I hadn't ignored them with Haley or maybe I just needed the nudges to be a little stronger. :) I know this probably won't be the end of all our doubts, but it at least lays quite a few to rest. Live and learn.