Health Care Hustler

So now I have absorbed this whole thing and here we go...where are we going from here? Well apparently where I was going involved looking like I had just been run over by the "T". I put myself to bed the night before with some Tylenol pm and of course, I had a serious sleeping pill hangover the next morning. My eyes were swollen & black, my hair was nothing I had ever seen & I am pretty sure I hadn't changed clothes from the day before. I was "Poor Pitiful Pearl" as my Grandmother used to say, when I was having a pity party. By the end of the day, it was even worse. If you have ever had a baby, you know what I mean...spit-up etc. I had to run to the store that night to get formula and I am fairly certain a few people snapped pics of me to send to Oprah for her "Desperate Mommy Make-Over" segment. What used to be my white t-shirt was now covered in carrot puke and spit-up...I was a vision of beauty! My hair had only gotten worse and was now some sort of "Snookie" from Jersey Shore/side pony-tail look. I know I smelled like old rotten milk that has sat out in the sun too long. I should also note, this was my second trip to the store for the day. My first attempt ended...we will just say POORLY! I ended up carrying screaming Rhett, while trying to push the basket and keep up with Reid, who has decided today, was going to be the day he would run around like a crazy person. As we were checking out he asked for stickers & of course my response was, "No, when you make bad choices you don't get stickers...stickers are for good boys." If you know Reid, you know what is coming next. "Mommy...well then can I have stickers for being bad? These stickers are mad stickers." I look down and he is holding stickers with mad faces...ONLY REID! The fight continues and finally I said to him, hoping he would relate to me somehow (because he is 4 and 4 year olds should be able to relate to Mommy melt-downs???) "Reid, do you want Mommy to have a nervous breakdown?" and Reid being Reid says, "Yes Mommy! Do it! Have a nerllous breakdown!" One thing I will say for sweet little Reid, he knows how to lighten the mood. I don't know if he can sense the tension in the air or what, but the boy has a way of making everything bad in the world go away. He is a like a breath of fresh air & can always put a smile on my face. Reid is the kid who is in trouble and we are trying so hard not to laugh at him, because we are "suppose to be mad".


When we got home, Scott and I were talking about where we are going from here and so on. I asked him if he had talked with his Dad today and what he had said. He said that he was still pretty upset and just didn't understand how he had 8 healthy grand kids and... Here we go again with the tears. I just got up from the table and headed to the laundry room before he could even finish his sentence. (This is where I like to go to have melt-downs, fits, etc). After a few mins, Scott comes to see if I have settled down and why I bolted like I was being chased by ICE. There are 8 healthy kids and Rhett is the only one who isn't...is that what you are going to say? Of course I knew that wasn't what was meant. Here came melt down #112...when Scott told me I needed to pull myself together & I couldn't just cry every time the subject came up. My Dad always used to tell me..."Crying is not going to solve anything." I am sad to say he was right...parents are always right. Why don't we just listen to them the first time? So...no more crying! OK, well realistically not as much crying...I still cry over the whole situation, but I am allowed to. So that night, I decided I would write the blog and it would be kind of like my therapy...I talk and someone listens and I get everything off my chest.

So what comes next? I am ready to take a new approach to this. A wise man once told me, "Play the ball, don't let the ball play you!" That wise man was Mike Conely & it was back in my softball days. I know you are thinking...what? Well, we are taking control of this situation. This spinal cord isn't going to win this battle and take us all down. We are going to find the best doctor to kick this tethered spine's ass (pardon my French). Well if Dr Doom & Gloom isn't going to do the surgery who is? The search is on! Here is where we started our search:

   http://health.usnews.com/best-hospitals/pediatric-rankings/neurology-and-neurosurgery

This is where we frantically get on the phone and call The Boston Children's Hospital and every children's hospital in Texas trying to get Rhett in to see a surgeon ASAP. Dallas, Houston and Boston would be three hospitals we would start with and if nothing came of these three, we will find three more. We get in touch with Dallas which is ranked the 26th best children's hospital for neurosurgery. Not great, but it was ranked higher than Cook's. When I received the packet in the mail from Dallas...it was addressed to "The Parents of Rhett WYFF" OK folks, well that just answered my question on why you are number 26! Try getting the name right and maybe I will take you seriously. I sound a little cocky for someone desperately trying to find Rhett the best Dr out there, and it is only fair to give them the benefit of the doubt...Wyss isn't the most common name, so maybe we won't rule them out quite yet. Only one doctor is taking new patients, so an appointment is set in Sept.

Next was Houston. Houston we have a problem! Houston is #4 for neurosurgery...this is getting better. I start to feel a little more comfortable with the idea of my 4 month old baby being operated on. The Dr we set the appointment with has done numerous tethered cords, much like Rhett's & graduated med school in 1977. OK, so this is a surgeon I am feeling more comfortable with already. He has more than 12 under his belt and has been practicing medicine longer than I have been alive...and is in a highly rated hospital for neurosurgery. For the record, we are not sure at this point what the magic number is for number of these surgeries performed, but we do know 12 is not the number we are looking for. I now start to feel as though we are applying to colleges and hoping to get into our first choice.

Which brings me to Boston. Boston Children's Hospital is a Harvard Medical School teaching hospital and ranked #1 for neurosurgery/ neurology as well as many other specialties. Here is the link:

    http://www.childrenshospital.org/about/Site1394/mainpageS1394P0.html

Scott makes the phone call...and I hear the message from where I was sitting. The man is speaking so quickly I question whether it was even English. Scott begins to leave his message and phone number where we can be reached in the slowest possible way.... 8....1....7. I was even getting impatient waiting for him to finish. I wanted to scream out "The guy has gone and gotten coffee and taken a smoke break waiting for you to finish with that phone number. He was bored waiting for you to finish....speed it up!" We didn't hear back from them that day & Scott was questioning why. Hey...just a thought, but maybe it took the guy the rest of the afternoon to figure out what you were trying to say because you were speaking a foreign tongue to them...they can't speak SLOWLY! He probably had everyone in the office listen to that message to try and piece together what you were saying. In my head I am thinking of every time I have called some sort of customer service center, which is mostly likely being answered by someone in another country who speaks absolutely no English and trying to interpret the best way possible, what they are telling me....you know you have been there. That is what this guy was experiencing I just know it. So finally they call us back. Scott goes through what is now our "sales pitch/ spiel" and we are told to send all of Rhett's medical records, scans everything we have for him and a check for $3000.00 and they will have the doctor put together a report of what she felt the best plan of attack would be. I will address the $3000 in just a sec. That's right, they don't "need" to see him...I am jokingly thinking "Yeah I bet they don't want us to come up there for a visit. They probably think 1. it is best if they give us a written report because there is no way in hell we would understand anything they were saying because we speak ssss....oooooo ssss.....lllll...ooooo......wwwww....lllllll....yyyyyyyyy. And 2. We speak ssss....oooooo ssss.....lllll...ooooo......wwwww....lllllll....yyyyyyyyy, they would be there all afternoon waiting for us to finish one sentence." Now the $3000...that's right $3000 just to read the scans. What the "french toast" is right. Scott called to tell me "we had to enclose a check" and when I asked how much (I was prepared for $500 maybe even $750) I hear a nervous laugh "well that's the thing...they want three grand just to read the scans and tell us what they think. "HOLY MOTHER TRUCKER" is what was running through my mind (don't worry...I have plenty of ways to make bad words sound just a little better)!

So I gather all Rhett's medical records and go ahead and cash in the coins in his piggy bank and to fed-ex I am heading. I was on the phone with my Dad trying to come up with a plan, on what this is going to cost and where Scott and I were going to find the money tree we were evidently fixing to need....DESPERATELY, if they want $3000 for a report??? (We had received a letter earlier if Cook's had done the surgery our co-pay was going to be somewhere between $30,000-$60,000...this is with insurance paying their 90%) The good news is the doctor in Boston is covered by our insurance...so maybe we would only be responsible for the $20 co-pay for the initial reading. That night I am "attempting" to read our insurance policy and what is and is not covered etc. Ummm, I would just like to go on the record here as saying; the health insurance industry could not possible make those things more confusing or difficult to interpret and possibly is just one big scam. (Disclaimer: if you or someone you know works, sells, writes, whatever health insurance policies I apologize, but they are confusing and vague) I felt like I needed "Insurance Policies: What is Covered and What Isn't for Dummies". From what I can determine, it is going to be cheaper for us to fly to Boston and see the Dr as opposed to just fed-exing scans. So this is where we are at this point...trying to figure out our insurance and possibly on our way to Boston. If I had my way, Boston would be our only option. Who is going to question #1??? Not me...but Scott, well he is another story.

After talking with the people in Boston, we learned they have developed a technique where they use a laser as opposed to a scalpel to melt the fatty tissue away, which also helps prevent re-tethering. (I think I forgot to mention before, there is a 30%-40% chance of the cord re-tethering and having to have the same surgery again). There is still a chance of nerve damage, but it is not as risky as cutting. They also have the ability of monitoring Rhett's nerves before-hand to determine what nerves are damaged prior to surgery as well as monitoring them during surgery to know what the nerves that are entangled in the fatty tumor control. Tethered cords are something they research/ specialize in and people fly from all over the world to this hospital because they are the best. That is all I would ever ask for...is the BEST surgeon to take a knife to my baby. Why would anyone accept anything less? This is our child and his spine/nerves we are talking about, not something simple like knee replacement. What happens in this surgery could determine whether Rhett wears a diaper for the rest of his life, has feeling in his legs or WALKS. Could you imagine having a little boy who couldn't run? That is all little boys want to do is run. If something happened during this surgery to him and he wasn't in the best hands possible, I would always blame myself for not giving him the best available. That is something I would never forgive myself for. Why would any other doctor even be an option at this point? There is nothing in this world that would keep me from getting Rhett into Boston...even if I had to become his "Health Care-Hustler". I can't imagine they would turn him away and say "no, we aren't going to do surgery on your son". We may have to "mortgage the farm", but whatever it costs; whatever has to be done this is my new mission. Don't be alarmed if you see me "hocking" stuff...the first things to go are the boat and the 4-wheeler. After that, who knows! I wonder if you can "Priceline" surgery? Just Kidding. I am officially "playing the ball"...so get ready Boston, HHHHHHH......EEEEEEEEE....RRRRRRRRR.....EEEEEEE WWWWW....EEEEEEE CCCCC.....OOOOO.......MMMMMM......EEEEEE! (This is my way of speaking/typing slowly if you didn't get it earlier). Whether you take us or not! Holy Guacamole...what if they don't take us?
Who is going to turn this sweet face away?