Monday, August 23, 2010
The Wyss' are headed to Beantown
We are headed to Boston! Our first appointment to meet with the Neurosurgeon is next Tuesday, August 31st. Rhett, Scott & I are flying out Sunday morning and will be home Tuesday evening. So hopefully we will have a game plan next week. Thanks to everyone for everything! So many people have offered to help us out during all of this & Scott & I both, appreciate everything so much! We are so blessed to have such amazing friends & family!!! Thank You, Thank You, Thank You!!!
Sunday, August 22, 2010
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?
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?
Saturday, August 21, 2010
A Day with Dr. Doom & Gloom
The alarm went off at 6:15 am...way too early for me. The day had finally rolled around, we were finally meeting with the Neurosurgeon and hopefully we would leave there with a game plan. As we walked into Cook's, I could not help but think back to when Haylee (my niece) was there 3 years earlier. Haylee was born early and spent the first 6 weeks of her life in the NICU at Cook's. I guess I took it for granted that I had Reid and he was perfectly healthy. I knew babies were not always born healthy, but until Haylee, I never thought I would ever know of anyone who had to go there. How ironic is it that now, I am walking through the doors at Cook's with my baby?
As we are getting checked in, the receptionist hands me some paperwork to fill out. I get to the family medical history section...please check all boxes that apply if any member of your family has any of the following:
Headaches
Migraines
Drug Addiction
Depression
Schizophrenia
Mood Swings
Panic Attacks
and the list of mental disorders went on and on
I set there for a second and thought to myself...if it hasn't been clinically diagnosed, do I have to check yes??? I am pretty sure there are plenty of our family members who are crazy, they just haven't been "officially" diagnosed with it....so we will just check "NO"!
We finally make it to the exam room and Rhett is laying on the table covered in paper. He has now discovered a great new game...wad the paper up all around him, until he is buried in it. He had every leg and arm moving as fast as his little body could make them go, playing with that paper...it was so funny. The Dr. came in and the child was just two little chubby legs going 100mph and paper covering everything else. He checked Rhett's leg movement & response to touch...all were good. Then he got down to the details. He explained the three levels of tethering and how Rhett was somewhere in the middle. He then began to talk about what was actually involved in Rhett's case. He said Rhett's situation was more difficult than most, because he had nerve roots involved in the fatty tumor (which is what his spine is attached to). He had no way of determining what nerves were attached and if they were nerves he could save during the surgery. He explained that once the nerves were "sacrificed" whatever that nerve controlled would never function properly again. If the surgery was not done soon, there would just be more and more damage and it would slowly cause damage further up the spine. I could slowly feel the tears building up. I was trying so hard to fight them because I didn't want him to think I was some emotional train wreck, but it was too late, I could feel them coming.
I sat there with tears pouring out of my eyes as he said surgery needed to be done within the next 1-2 months. He explained Rhett had nerves that were entangled in the fatty tumor and when they went to cut the tumor out, and free the cord, there would most likely be nerve damage. It could be anything from the waist down. He could lose all feeling or movement in his legs/feet, control of bowels/bladder or it could be something as small as his little toe. Worse case scenario-nothing from the waist down moves or has feeling. Best case scenario-no nerve damage at all, and then he quickly followed up with... "In reality, there will be nerve damage."
I'm sorry what???
As we start to bombard him with questions that were never really answered, the tears came faster and faster.
I remember asking him "So when you say sacrifice nerves...what do you mean?"
"Well, I am not going to get into the art of surgery with you, but I mean cut the nerves and whatever that nerve controls is gone." was his response.
So to sum it all up, he has no idea what he is getting into, until he operates. He has no idea what nerves will be sacrificed and which will be saved, and just because he has movement and feeling in his legs and feet now...he may not after surgery. Basically we needed to cut our losses now, because it was not going to get any better, it would only get worse. The only thing running through my mind was "I have a perfectly happy kicking and bouncing baby & after this surgery all of that could be gone???" These perfectly functioning nerves could be tangled up in the fatty tissue and have to be cut to free the cord. Or those nerves could be what control his bowels or bladder and the baby would never have control of either for the rest of his life??? Or, it could be a nerve that controls a calf muscle??? We don't know and won't know, until surgery when they are monitoring what nerves are being sacrificed or even later on in his life when everything starts to surface. He will stay in the hospital a few days afterwards because he must lay flat & he will be in a medically induced coma, to keep him from moving. Afterwards, he will still have to remain flat & be carried on a pillow with very little movement.
After we asked every question we could think of and we were given the most vague response possible, he advised us to seek a second opinion. We looked at the MRI scans, and I might as well have been trying to read Mandarin. I had no idea what I was looking at or what we were looking for. He pointed out where the cord was attached and the nerve roots which were entangled in the fatty tissue & still I was lost. I asked the Dr. how many of these surgeries he had performed...his answer was 12 in the 4 years he had been practicing. And in his next breath..."Would you like to go ahead and schedule Rhett's surgery?"
Ummmm no thank you...I need to sit on this for at least 10 mins before I do anything. I think I may be somewhat bitter toward this Dr because he just slapped me in the face with something I wasn't prepared for. Is he incapable of doing this surgery...no. He is a bad Dr....of course not. I am just going with my instinct here and something is telling me to run out of this door as fast as I can & don't look back. I feel like in this case I am sort of "shooting the messenger". I am mad at him for telling me what every other Dr is most likely going to say...he just shocked me with this news. I went in there thinking we would talk about doing surgery for this "minor" tethered cord in a year or so and I got blindsided with surgery in one month and it is more difficult because now we see nerve roots are involved & oh by the way your baby may not move of feel his legs after this or be able to control his bladder/bowel. Have a nice day and don't forget to check-out & pay your bill on your way out! (just so we are clear here...he didn't actually say that, I am being sarcastic, but you get the point). I feel like I need to add this...Cook Children's is an awesome hospital. What they do for sick children is incredible, and I do think they perform miracles there (Haylee for example). The Dr's at Cook's ARE AMAZING, but for Rhett...I had a gut feeling this was not where we needed to be.
We get in the car and I am an emotional disaster and of course what happens? The battery on the car is DEAD! ARE YOU FREAKING KIDDING ME? Normally I would have flown into a rage of furry, but there was an eerie calm that came over me...and I couldn't have cared less about the stupid car, the stupid battery or anything. The car ride home was silent...it was almost an awkward silence. Almost like both of us were scared to say anything. All I could think about is "What happened? How did this happen? Why didn't they just tell us it was this bad from the beginning? Someone should have prepared me for what I was walking into! He can have this surgery and afterwards have nothing from the waist down? Is this some sort of punishment for all the things I have ever done wrong? He is just a little baby...he doesn't deserve this." And then the silence was broken when Scott asked "Are you going to say anything?" I couldn't...I couldn't open my mouth and even form a sentence. I couldn't even look at him. We pulled in the drive way and I just sat there. I couldn't get out of the car, I just sat there with my face buried in my hands.
Then we get to the part where we start making the phone calls because everyone was waiting to hear what the Dr. said. I made Scott call my parents because I knew there was no way I could even begin to talk about it, much less tell my parents what the doctor had said. After he talked to my Mom, it finally started to hit him. The next call was to his Mom and that is when he started to fall apart...which made it worse for me, because he is suppose to be the strong one. It clearly is in his job description as "The Dad", to be the one who is responsible for holding it together. When, and only when, no one is around, then you can fall apart too(again sarcasm).
I finally called Nichol later that afternoon, as I am telling her all the events of the day, I said "the only thing left that can possibly happen to me today is to get struck by lightening"...no kidding Scott came downstairs after I got off the phone, to let the dog in because it was starting to rain. Needless to say, I didn't leave my bunker (aka my house) the rest of the day. Do you blame me?
As we are getting checked in, the receptionist hands me some paperwork to fill out. I get to the family medical history section...please check all boxes that apply if any member of your family has any of the following:
Headaches
Migraines
Drug Addiction
Depression
Schizophrenia
Mood Swings
Panic Attacks
and the list of mental disorders went on and on
I set there for a second and thought to myself...if it hasn't been clinically diagnosed, do I have to check yes??? I am pretty sure there are plenty of our family members who are crazy, they just haven't been "officially" diagnosed with it....so we will just check "NO"!
We finally make it to the exam room and Rhett is laying on the table covered in paper. He has now discovered a great new game...wad the paper up all around him, until he is buried in it. He had every leg and arm moving as fast as his little body could make them go, playing with that paper...it was so funny. The Dr. came in and the child was just two little chubby legs going 100mph and paper covering everything else. He checked Rhett's leg movement & response to touch...all were good. Then he got down to the details. He explained the three levels of tethering and how Rhett was somewhere in the middle. He then began to talk about what was actually involved in Rhett's case. He said Rhett's situation was more difficult than most, because he had nerve roots involved in the fatty tumor (which is what his spine is attached to). He had no way of determining what nerves were attached and if they were nerves he could save during the surgery. He explained that once the nerves were "sacrificed" whatever that nerve controlled would never function properly again. If the surgery was not done soon, there would just be more and more damage and it would slowly cause damage further up the spine. I could slowly feel the tears building up. I was trying so hard to fight them because I didn't want him to think I was some emotional train wreck, but it was too late, I could feel them coming.
I sat there with tears pouring out of my eyes as he said surgery needed to be done within the next 1-2 months. He explained Rhett had nerves that were entangled in the fatty tumor and when they went to cut the tumor out, and free the cord, there would most likely be nerve damage. It could be anything from the waist down. He could lose all feeling or movement in his legs/feet, control of bowels/bladder or it could be something as small as his little toe. Worse case scenario-nothing from the waist down moves or has feeling. Best case scenario-no nerve damage at all, and then he quickly followed up with... "In reality, there will be nerve damage."
I'm sorry what???
As we start to bombard him with questions that were never really answered, the tears came faster and faster.
I remember asking him "So when you say sacrifice nerves...what do you mean?"
"Well, I am not going to get into the art of surgery with you, but I mean cut the nerves and whatever that nerve controls is gone." was his response.
So to sum it all up, he has no idea what he is getting into, until he operates. He has no idea what nerves will be sacrificed and which will be saved, and just because he has movement and feeling in his legs and feet now...he may not after surgery. Basically we needed to cut our losses now, because it was not going to get any better, it would only get worse. The only thing running through my mind was "I have a perfectly happy kicking and bouncing baby & after this surgery all of that could be gone???" These perfectly functioning nerves could be tangled up in the fatty tissue and have to be cut to free the cord. Or those nerves could be what control his bowels or bladder and the baby would never have control of either for the rest of his life??? Or, it could be a nerve that controls a calf muscle??? We don't know and won't know, until surgery when they are monitoring what nerves are being sacrificed or even later on in his life when everything starts to surface. He will stay in the hospital a few days afterwards because he must lay flat & he will be in a medically induced coma, to keep him from moving. Afterwards, he will still have to remain flat & be carried on a pillow with very little movement.
After we asked every question we could think of and we were given the most vague response possible, he advised us to seek a second opinion. We looked at the MRI scans, and I might as well have been trying to read Mandarin. I had no idea what I was looking at or what we were looking for. He pointed out where the cord was attached and the nerve roots which were entangled in the fatty tissue & still I was lost. I asked the Dr. how many of these surgeries he had performed...his answer was 12 in the 4 years he had been practicing. And in his next breath..."Would you like to go ahead and schedule Rhett's surgery?"
Ummmm no thank you...I need to sit on this for at least 10 mins before I do anything. I think I may be somewhat bitter toward this Dr because he just slapped me in the face with something I wasn't prepared for. Is he incapable of doing this surgery...no. He is a bad Dr....of course not. I am just going with my instinct here and something is telling me to run out of this door as fast as I can & don't look back. I feel like in this case I am sort of "shooting the messenger". I am mad at him for telling me what every other Dr is most likely going to say...he just shocked me with this news. I went in there thinking we would talk about doing surgery for this "minor" tethered cord in a year or so and I got blindsided with surgery in one month and it is more difficult because now we see nerve roots are involved & oh by the way your baby may not move of feel his legs after this or be able to control his bladder/bowel. Have a nice day and don't forget to check-out & pay your bill on your way out! (just so we are clear here...he didn't actually say that, I am being sarcastic, but you get the point). I feel like I need to add this...Cook Children's is an awesome hospital. What they do for sick children is incredible, and I do think they perform miracles there (Haylee for example). The Dr's at Cook's ARE AMAZING, but for Rhett...I had a gut feeling this was not where we needed to be.
We get in the car and I am an emotional disaster and of course what happens? The battery on the car is DEAD! ARE YOU FREAKING KIDDING ME? Normally I would have flown into a rage of furry, but there was an eerie calm that came over me...and I couldn't have cared less about the stupid car, the stupid battery or anything. The car ride home was silent...it was almost an awkward silence. Almost like both of us were scared to say anything. All I could think about is "What happened? How did this happen? Why didn't they just tell us it was this bad from the beginning? Someone should have prepared me for what I was walking into! He can have this surgery and afterwards have nothing from the waist down? Is this some sort of punishment for all the things I have ever done wrong? He is just a little baby...he doesn't deserve this." And then the silence was broken when Scott asked "Are you going to say anything?" I couldn't...I couldn't open my mouth and even form a sentence. I couldn't even look at him. We pulled in the drive way and I just sat there. I couldn't get out of the car, I just sat there with my face buried in my hands.
Then we get to the part where we start making the phone calls because everyone was waiting to hear what the Dr. said. I made Scott call my parents because I knew there was no way I could even begin to talk about it, much less tell my parents what the doctor had said. After he talked to my Mom, it finally started to hit him. The next call was to his Mom and that is when he started to fall apart...which made it worse for me, because he is suppose to be the strong one. It clearly is in his job description as "The Dad", to be the one who is responsible for holding it together. When, and only when, no one is around, then you can fall apart too(again sarcasm).
I finally called Nichol later that afternoon, as I am telling her all the events of the day, I said "the only thing left that can possibly happen to me today is to get struck by lightening"...no kidding Scott came downstairs after I got off the phone, to let the dog in because it was starting to rain. Needless to say, I didn't leave my bunker (aka my house) the rest of the day. Do you blame me?
In the Beginning...
I decided I would jump on the bandwagon and become one of those "bloggers". Unfortunately, my blog won't be about cooking my way through Julia Child's Cookbook...although that would be entertaining! I think I am more of a Paula Deen kind of girl anyway...maybe my next blog adventure will be "Cooking with Paula Deen". I would definitely knock that blog out of the park and most likely gain 50lbs in the process. As long as her recipes don't call for oleo or lemon zest, we are good. So there we have it...Blog #2 is already in the works! But back to Blog #1, which I haven't even successfully completed, much less started.
So where do I start? Most of you know somewhat of the story of Baby Rhett, but I will go ahead and include the "Cliff's Notes" for those who are clueless. Let's rewind to April 22, 2010...Baby Rhett was born! Rhett Henry Wyss arrived weighing in at a whopping 8.4 lbs and 20" long. Go ahead and say it..."That was a big baby!" Tell me about it! I was there! So he was born, life was perfect as we knew it. We were the parents of two beautiful little boys Reid & Rhett...yes even their names were perfect together. We were our own little story right out of the story book. Then at 11:30 that night a nurse came in and busted our little perfect family bubble. She rained on my parade and basically was the beginning of what was going to be a million questions we had that would never be answered. Here is how it all began, when the ICU Nurse said...
"We were giving Rhett a bath and noticed something wrong, but we don't know what it is."
I will save us all a little time and sum up what the conclusion was to "what was wrong" with Rhett. He had a little bump on his tailbone that had a small indention on it. After two ultra-sounds and a MRI, Rhett was diagnosed with a tethered spinal cord, here is a link to help describe what that means.
http://www.healthline.com/galecontent/tethered-spinal-cord-syndrome
Basically, his spinal cord is attached to a fatty tumor and it should hang freely. It is related to spinal bifida only in that they are both developmental issues with the spinal cord. Does he have spinal bifida...no. How did this happen? I will go ahead and save you from asking THE QUESTION....Yes, I took my pre-natal vitamins. Did I forget a day or two...most likely. I was pregnant and it wasn't uncommon for me to forget to put shoes on, and I am human...everyone forgets things time to time. Tethered cords have nothing to do with folic acid or vitamins, so I'm told. No one really knows what causes it or what goes wrong. There is not one day that goes by that I don't wonder what I did wrong when I was pregnant. Was there something I could have avoided...like the microwave? I don't know & I guess we will never know. Every time I hear someone ask "what causes this?", I just know one day a doctor is going to say "You were a careless pregnant lady who inhaled too much pine sol!"
When we received the phone call from our pediatrician confirming Rhett's diagnosis, he seemed optimistic. He felt that as active as Rhett is, that this would be an issue we would tackle later down the road. We were told all along that Rhett's case was not severe and he would show no signs of this affecting him in the short term. We were assured he would be doing everything a baby without a tethered spine would do...and he is. Rhett is a strong & very active little baby. Some of the main issues caused by a tethered cord are no feeling or movement in legs and/or feet, and problems with bladder and bowel control. Rhett has always had great movement in his legs/feet, so no one was too concerned as far as movement was concerned. As far as bladder & bowel control, there is no way to tell in a newborn & that is usually something that is affected later in life. So based on the milestones Rhett was achieving, the first reading of his MRI & what the doctors were relaying to our pediatrician, we were told surgery would be something we would worry about later on and where and how his spine was tethered was in our favor. His cord was tethered low on his back...the lower down it is, the less that is affected. We were told to schedule an appointment with the neurosurgeon and we would come up with a game plan and go from there. So the appointment was made, and Aug 18th we would have a game plan and hopefully some answers to all our questions and hopefully we would be getting our storybook life right back on track...things were looking up.
So after our first appointment yesterday with the Neurosurgeon, I decided I would blog about our experience with Baby Rhett. It is an easy way for us to keep everyone up-to-date with what is going on with Rhett & what is also going on in our crazy life! I complain about "the crazy", but we all know nobody in this family would be happy if there was one ounce of sanity around here! I feel like I need to add a disclaimer to this blog as well. I am sure at some point throughout this whole process I will in some way offend or piss someone off. I will not make apologies for this blog. If you do not like what I write in my blog, you are more than welcome to stop reading it, burn it or print it off and use it as toilet paper...it makes no difference to me. So with that said...welcome to our family blog!
So where do I start? Most of you know somewhat of the story of Baby Rhett, but I will go ahead and include the "Cliff's Notes" for those who are clueless. Let's rewind to April 22, 2010...Baby Rhett was born! Rhett Henry Wyss arrived weighing in at a whopping 8.4 lbs and 20" long. Go ahead and say it..."That was a big baby!" Tell me about it! I was there! So he was born, life was perfect as we knew it. We were the parents of two beautiful little boys Reid & Rhett...yes even their names were perfect together. We were our own little story right out of the story book. Then at 11:30 that night a nurse came in and busted our little perfect family bubble. She rained on my parade and basically was the beginning of what was going to be a million questions we had that would never be answered. Here is how it all began, when the ICU Nurse said...
"We were giving Rhett a bath and noticed something wrong, but we don't know what it is."
I will save us all a little time and sum up what the conclusion was to "what was wrong" with Rhett. He had a little bump on his tailbone that had a small indention on it. After two ultra-sounds and a MRI, Rhett was diagnosed with a tethered spinal cord, here is a link to help describe what that means.
http://www.healthline.com/galecontent/tethered-spinal-cord-syndrome
Basically, his spinal cord is attached to a fatty tumor and it should hang freely. It is related to spinal bifida only in that they are both developmental issues with the spinal cord. Does he have spinal bifida...no. How did this happen? I will go ahead and save you from asking THE QUESTION....Yes, I took my pre-natal vitamins. Did I forget a day or two...most likely. I was pregnant and it wasn't uncommon for me to forget to put shoes on, and I am human...everyone forgets things time to time. Tethered cords have nothing to do with folic acid or vitamins, so I'm told. No one really knows what causes it or what goes wrong. There is not one day that goes by that I don't wonder what I did wrong when I was pregnant. Was there something I could have avoided...like the microwave? I don't know & I guess we will never know. Every time I hear someone ask "what causes this?", I just know one day a doctor is going to say "You were a careless pregnant lady who inhaled too much pine sol!"
When we received the phone call from our pediatrician confirming Rhett's diagnosis, he seemed optimistic. He felt that as active as Rhett is, that this would be an issue we would tackle later down the road. We were told all along that Rhett's case was not severe and he would show no signs of this affecting him in the short term. We were assured he would be doing everything a baby without a tethered spine would do...and he is. Rhett is a strong & very active little baby. Some of the main issues caused by a tethered cord are no feeling or movement in legs and/or feet, and problems with bladder and bowel control. Rhett has always had great movement in his legs/feet, so no one was too concerned as far as movement was concerned. As far as bladder & bowel control, there is no way to tell in a newborn & that is usually something that is affected later in life. So based on the milestones Rhett was achieving, the first reading of his MRI & what the doctors were relaying to our pediatrician, we were told surgery would be something we would worry about later on and where and how his spine was tethered was in our favor. His cord was tethered low on his back...the lower down it is, the less that is affected. We were told to schedule an appointment with the neurosurgeon and we would come up with a game plan and go from there. So the appointment was made, and Aug 18th we would have a game plan and hopefully some answers to all our questions and hopefully we would be getting our storybook life right back on track...things were looking up.
So after our first appointment yesterday with the Neurosurgeon, I decided I would blog about our experience with Baby Rhett. It is an easy way for us to keep everyone up-to-date with what is going on with Rhett & what is also going on in our crazy life! I complain about "the crazy", but we all know nobody in this family would be happy if there was one ounce of sanity around here! I feel like I need to add a disclaimer to this blog as well. I am sure at some point throughout this whole process I will in some way offend or piss someone off. I will not make apologies for this blog. If you do not like what I write in my blog, you are more than welcome to stop reading it, burn it or print it off and use it as toilet paper...it makes no difference to me. So with that said...welcome to our family blog!
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