We met with a Dr. at Children's Hospital (I will not disclose his name...) and we were ANYTHING BUT IMPRESSED. First of all before I get into our experience I want you to know that I do not enjoy talking bad about doctors...I respect ALL doctors and how they came to become who they are today. However, I do not respect the fact that #1) He didn't even LOOK at Hailey's chart before coming in the room 2.) His lack of organization 3.) His awful t.v. evangalist/used car salesman personality...pure awful!
He started off by immediately coming in the room (not even introducing himself) by exclaiming "This is GREAT NEWS for you guys! Great news! She can be HEALED! This is a CURABLE disease!!!" Immediately I went into defensive mode. We have NEVER been told Hailey has a disease, we have been told by 4 doctors she needs a surgery to stabilize her ligaments and tendons, and I obviously expect that if I am driving 4 hours to come and see you that you must have a course of action for my baby girl who has been through pure hell with this craziness. Sorry if it sounds bitchy, but it has been a LONG & EXHAUSTING process. So I counter back with "What is "THIS"...we have NEVER been told Hailey has any disease. Are you telling me Hailey has a disease we don't know about?" He then proceeds to tell me that our doctor in Indy wasn't sure about everything and that he wanted him to look at Hailey's case and see what he thought. He said he did and it is called "Reflex Sympathetic Dystrophy" or "Complex Regional Pain Syndrome." He asked the nurse to go and get Neil and I an article on this disease and he also handed us one. When the nurse came back with the article he took it from her, looked over it, and asked if this one was about children. She said it had a children's article in it, and he looked over it some more and told her to take it out. It was really odd...like he was being sneaky. Another *red flag*. I then ask how this can be treated and he says with PT. I explain to him that we have tried this route and would LOVE if it had worked, but less than a month into PT she re-injured her ankle, was casted, and couldn't do it. He went on to explain that this disease is one that sends false signals to the brain and the ankle will snap, sprain, and turn black and blue. He said that what needs to happen is when she injures it we keep her out of a splint, air cast, boot, or cast. She needs to walk on it anyways. He said that he has "The BEST PT IN THE WORLD" (another red flag) who can CURE her. (Sidenote: If it sounds too good to be true, it probably is...but I am willing to listen further...) He then hands us his business card and tells us to have our PT email him and then says "I get 150+ emails per day, my spam filter is set on the highest to filter out junk mail, so have her email me every day until I respond because I am sure I won't get the first 6 or 7 she sends." ARE YOU KIDDING ME?!?! This just did it for me...that is THE most uneffective, unprofessional method I have EVER heard a doctor say. He left the room for a second and I started bawling...
So once again I feel that we may be back at square one. I am exhausted. I am praying that our Dr. in Indy reads his notes and realizes that where he sent us probably wasn't the right place. I am praying that he will send us to Baltimore where the doctor is that we originally were set up to see. The doctor that returned our phone call himself the same day we called...the doctor that took 45 minutes of his own time to explain what he got out of the CT's, x-rays, and MRI's, the course of action he would take, and the times and days he would do it so that we wouldn't be away from home for more than a week. He was so personable, so knowledgeable, so thorough.
So on our 4 hour drive home I was doing A LOT of complaining...and my sweet husband just sat there and listened and kept saying "I know babe..." I decided to give him a break from all of my worries, complaints, etc. As I was staring out of the window we kept passing all of these churches in the middle of the country... Then pretty soon we passed 3 HUGE lit crosses, then a little bit down the road...a few more HUGE lit crosses. As I sat there thinking to myself how unfair, complicated, and difficult this situation is... I am NOT in control of our fate. I cannot control what the ultimate plan for our family is... That even when I feel like I am stuck in the middle of no where...that God is still with us and He has a plan. I will trust in Him and lean not on my own understanding...because apparently my own understanding is CONFUSED right about now.
So...again I ask a favor of you: Please pray for the doctor's taking care of our sweet girl, please pray for our family that we make the best decisions regarding our daughter, and pray for all of our families and friends who have been AWESOME at listening to me complain!