Rhett's Surgery

So, it was finally here.  The day we had unexcitedly been preparing for.  Neither Scott, nor I slept one wink that night.  Rhett on the other hand, slept “like a baby”.  The alarm went off at 5:00am.  I just laid there…maybe if I just hide under the covers the day will pass me by and we won’t have to go.  Scott put Rhett in the bed with me and kept telling me we had to get up and go.  So I did what any adult mother would do, I held Rhett as tightly and closely as I could and refused to go.  Scott just looked at me like, “oh crap here we go again”…and oh yes, we went there… again.  I started crying and I was serious business, I was not getting dressed, I was not getting in the car and I WAS NOT TURNING MY BABY OVER TO ANYONE.   We had a hostage situation.  Scott did what Scott does best, he very slowly and carefully moved away from the situation without any sudden movements.  He knew from past experiences, any sudden movements or loud noises could cause a riot and he has been trained intensively on how to react in these situations.  He told me he was going to pick up my Dad from his hotel and he would be back to get us and he quickly bolted for the door.  So I sucked it up, released my tiny hostage and got with the program. 

We arrived at the hospital, got checked in and they called us back.  We went to the pre-surgery holding area, which basically looked like “the pit” on Grey’s Anatomy.   I do need to add the funniest part of the whole day, the Nurse Practitioner went to put Rhett’s security bracelet around his ankle and it was too small.  My Dad was quite amused by Rhett’s little tree trunk leg.  I was hoping the surgical gown they had waiting for Rhett would fit or we would never live this down.  Scott and I dressed him in his new little outfit, which for once was too big.  By this time, the fact that he had not eaten in awhile had started to sink in.  He was looking for anything he could get in his little mouth that had any sort of taste…so what does he grab???  His toe of course!  He was sitting there sucking on his toes, and would look up at me like these things have no taste…is this all ya got Mom?  We did everything to entertain him and finally I passed him over to Scott and he gave up and went back to sleep.  The surgical team started to come over and introduce themselves, go through what they would be doing while in surgery and answer any questions.  We spoke with Dr G and she assured us this was going to go perfectly and not to worry.  We signed our life away and it was all coming to a head.  My stomach sank…I knew what was next, relinquishing my tiny baby to them.   Dr G finished going over everything and said she would see us after surgery.   The anesthesiologist team came over to get Rhett and take him back.

WAIT…what?  No, we aren’t ready yet!  There is no way I can even describe what this felt like.  I knew I would never officially be “ready” for them to take him back, but I needed more time.  Here we go yet again…the tears start pouring down my face, the anesthesiologist holding Rhett was a young, sweet girl named Sarah.  Sarah turned back cradling Baby Rhett, trying to be as nurturing as possible to him turned back and asked if I wanted one more kiss. 

So I got my last little kiss, they took him away and as the doors closed behind them I was hysterical.  All the “What if’s” that had been running through my mind for the past several months, were getting louder and faster.  Handing your sweet tiny baby over to someone and not knowing if they are going to bring him back is the worst feeling in the world.  What if something happens?  What if he goes in there and comes out a completely different baby?  What if he is allergic to anesthesia?  What if they get in there and it is worse than they thought?  What if he doesn’t wake up?  The “what if’s” went on and on and were beginning to get ridiculous.  “What if the Dr has a heart attack?” We went into the Family Waiting Area and I was prepared for a long day.  We were originally told to expect the surgery to last 8 hours.  So I just knew by the end of the day, if I continued on this path my head was going to explode from all the noise. 

It was too late any way, they had already taken him back and whatever happens at this point is out of my control.  So we now all I can do is wait….and wait…. and wait.  The nurse would call in and give reports of how he was doing every 90 mins.  As I was listening to her make her rounds with her reports for different patients, I noticed it was always the same report.  Then I started to think…”Well if it is bad news, it isn’t like they are going to tell this chick and she is going to give us some horrible report.  That is the Dr’s job…right?  She is pretty much giving everybody a standard report.  Then my mind starts up again...

The nurse made her way to us to give us the first report.   “The incision was made at 9:29 am and things are going well.” 

The next report came an hour and a half later and she said “Things are still going great”.

All this waiting was starting to wear me out.  I need a real report…a detailed report…could you just put me on the phone with this surgical nurse reporting to you?  Or send me some sort of picture?  I need a little more detail than “things are going well”.  She was a very nice lady, probably someone’s sweet grandmother, but I wasn’t looking for a sweet lady to feed me the standardized report she was giving all the parents impatiently waiting for their children to get out of surgery.  Of course, she probably wasn’t given any details and I am fairly certain if she did know that something horrible went wrong, we would all be able to read it plastered all over her face.  She just kept her happy little grandma smile.  I decided right then and there someone needed to lobby for stressed out Mommy’s who children are in surgery for this new “Obama Healthcare Plan”.  We need some sort of clause (we can even call it the “Elizabeth Law”) that states:  Any mother/father or legal guardian should be given a menu to choose from that consists of a variety of drugs/alcoholic beverages to calm their nerves while waiting for their child in surgery.  It should be something similar to ordering sushi, where you are given a pencil and a piece of paper filled with different options, you check what you want and they deliver the goods.  My order would have been somewhat of a cocktail consisting of Malibu Rum & Coke…scratch that I need the good stuff, make that Crown & Coke and just surprise me with a narcotic that will blend well with the drink.  And make it snappy!!!   Another 90 minutes passed and our little smiling grandma came bouncing around the corner with that same genuine smile.  “I have good news…” she says happily.  “The sandwich lady will be here shortly and she has a brown bag special for $5 and she will only be here for 5 minutes…that’s not long, so you better get there quickly!!!”  Are you freaking kidding me????  No, I don’t want a stupid sandwich, granny…I want a muscle relaxer …where is the drug lady???  When will she do everyone in this area a favor and show up with a brown bag special?  She would definitely be “good news”…not some dried up sandwich lady.  Seriously!  I felt like ripping my hair out at this point…sandwich lady!  Really?  (See the need for the “Elizabeth Law” that needs to be in this Healthcare plan everyone is so fired up about!)

So finally she came around with our “Rhett Report”.  She told us Dr G. was getting ready to suture him up and she would be up in about 45 minutes to go over surgery with us and then we could go to recovery to see Rhett.  Scott, my Dad and I just looked at each other…that was much quicker than originally planned.  This most likely meant good news.  So Dr G finally comes up and has a a very pleased look on her face.  Finally, some reassurance that this might end well…

She walked up to us smiling and says “I did a phenomenal job!”  It wasn’t cocky when she said it either…she was just stating the facts.  Besides, if she was being cocky…she had every right to be.  SHE JUST REBULIT my tiny baby’s spinal cord and did not paralyze him in the process.  I felt the weight beginning to lift off my shoulder and I could suddenly breathe.  This woman is my hero and a MIRICLE WORKER.  She went over all the details of the surgery, but I will just break it down for you like this:

Basically she got most of the tumor out, while leaving all nerves intact.  She had each nerve on a monitor that alerts her if she gets near it while removing the tumor…and she happily reported the sensors never made a sound!!!!  She freed the cord, rebuilt the end of his spinal cord and everything seemed fine.  His dura (what holds the spinal fluid in) was not damaged by the tumor and only had one small hole in it, which she repaired.  He has 4 layers of stitches to keep everything that is supposed to be inside, inside and things outside, out.  She didn’t think we would have much to worry about as far a re-tethering, but we still needed to keep an eye out and watch for any symptoms.  All in all, she felt she did an excellent job and he would recover quickly.  Next we were on to meet our sweet little baby in recovery.  To Be Continued…

A typical day

So we arrived at the house the hospital provides for families who travel long distances to stay in while their children are being treated at CHB.  We will just say we arrived and the next day we departed.  Luckily we found an apartment off Newbury Street, here in the city.  They had a studio apartment available right then, so Scott cut a deal with them and it was only a little bit more than we were paying to live in the “Hospital Dorm” to now be in a comfortable apartment in a great part of town, so I was sold.  Day 5, move #5…I may never move again!    I have never gotten thing packed up so quickly in my life.  If you didn’t know better, you would have thought I was evading the law.  I could not get out of there fast enough and into my new place.   When Rhett is released from the hospital and Reid arrives in Boston, we will move to a larger apartment…so I take that back, I will be moving yet again, but at least we are moving up!  So after the living situation was squared away and we collected the keys to our new casa, we made a mad dash to the hospital for Rhett’s pre-op appointment.

Once again, we arrive and Rhett is starting to get the hang of how to put on a show for all the nurses and doctors.  He is quite the little charmer!  We were there for 3 long hours, long miserable hours.  The pre-op area is full of fasting kids waiting to go into surgery, so no food or drink is permitted.   Of course when they tell you this, you immediately feel like you will die of thirst & starvation if you don’t eat and drink right then.  The worst part of the day was drawing blood.  Rhett’s veins were too small & the needle was too big, so there was a lot of poking, and moving the needles with no blood flow.  This was bad…this was VERY BAD!   Rhett went ballistic screaming and crying, which makes me start crying.   I couldn’t stand to see what little bit of blood was actually coming out and the fact they were hurting my little tiny baby was way more than I could handle (that and I am a little on edge and extremely sensitive right now).  After we hit the 2 try limit, the Head of Poking Sweet Little Innocent Babies and Making Them Cry (yes, this was her official title) made the decisions to stop tormenting my sweet helpless baby.  I am sure it wasn’t that bad, but Rhett and I were very upset and traumatized by the whole experience.  We finished up going over any questions, exactly what was taking place Wed and what would happen after surgery was complete.  

We check in at 7:00am, surgery is at 8:30 am.  We go back with him to get him settled in his hospital attire, speak with the doctors & nurses who will be in the operating room, sign our life away, answer more questions and then they take him back.  Dr G will identify where every nerve is located within the tumor, she will then remove as much of the tumor as possible without disturbing the nerve roots, cut away the cord, rebuild the end of his spinal cord, make sure the derma (what holds the spinal fluid) is water tight, sew him up and he is off to recovery where his Momma is impatiently waiting for him.  Sounds easy enough right??? 

So Boston being crazy isn’t enough, back home my Mom had a blow-out in my truck, Jeff locked himself out of our house (aka Ft. Knox) twice and Reid is busy “watching Uncle Jason to make sure he doesn’t steal my mommy’s stuff”.  Why he thinks Jason is a common criminal, I don’t know.   This is all in a day’s work…I told you my life was crazy!  I would also like to point out the irony, that I lock myself out of our house on a regular basis and have to call Jeff to come let me in…how funny is it that it happened to him.  They always would laugh at me, because they just couldn’t understand how someone could lock themselves out of their own house…not so funny now is it!!!

So, now we just have to get through this surgery.  My Dad flew into Boston last night, and we will be at the hospital first thing in the morning.  To Be Continued…

On the Road Again...

1950 miles; 30 hours 28 minutes of driving; 8 hours of being stopped for gas, food and dirty diaper disposal; 18 "disagreements"; a few conference calls and we finally made it to Boston.  I did the math, and I don't drive that much in 2 months, much less 4 days.  As we pulled into Massachusetts, I told Scott I felt like I had accomplished something huge and I should be excited about being there, but I wasn't.  I would have rather been home with both of my little boys, living our normal-crazy life! 
Mom came down Thursday to pick up Reid and help me get things packed.  Leaving your 4 year old for this long is not an easy thing to do.  Does he drive me crazy sometimes?  Yes, but I miss my little "Chatty Charlie", as I like to refer to him.  In fact, I think I miss him more than he misses me.  In my defense, he is with my parents, so this means everything I have worked so hard at molding will quickly go down the potty.  What Reid wants, Reid gets, at Mimi & Pee Paw's house, so I am sure it will take me 6 months of damage control to get him back in working order.    I cried like a baby when they pulled out of the drive-way...you would have thought the poor child was going away to war.  I have never been away from my little side-kick this long…we need each other.  He will be flying to Boston after Rhett gets out of the hospital (Nov 11th-Nov 17th) so we won't be separated for too long. 
We left Ft Worth Friday morning and before we had even gotten to Dallas, we had already had 6 "disagreements".  I was pretty sure if this kept up 1.) I would leave Scott somewhere on the side of the road and do this thing myself or   2.) Throw myself out of the car...it could go either way.  We decided we would keep count of these "disagreements" just to see how high this number got by the time we ALL made it safely to Boston.  Lucky for both of us, the "disagreements" tapered off.  We made it to Memphis Friday night, after a long day of driving.  I hadn't been to Memphis since I was a kid, so I was pretty excited about this stop.  Memphis has everything a girl could want...Graceland & Bar-B-Q.  We were headed to Neely's (Down home with the Neely's-Food Network), but the reviews were not so bueno & even the local people said it was over-rated.  We instead went to another BBQ joint recommended by the hotel....holy moly guacamole it was GOOOOOOD!  Scott ordered one of everything on the menu, including BBQ spaghetti & it is a good thing he did.  BBQ spaghetti is a magical experience, if you haven't had it...get in your car, drive to Memphis, go wherever it is we went and get it!  You will thank me later.  If you have kids, feel free to bring them with you, the waitresses will hold them and entertain your children while you eat.  One held Rhett, while the other proceeded to dance and sing for "Boo Boo" as they referred to him.  It was the greatest...dinner and a show!
Saturday morning we hit the road early and it took us ALL DAY to get through Tennessee.  That is the longest state, pretty, but LONG!  We ended the day around 11pm in Roanoke Virginia.  The further north we drove, the prettier the scenery was.  Sunday we did Virginia, West Virginia, Maryland, Pennsylvania, New Jersey, New York and Connecticut.  Virginia and West Virginia were beautiful.  We were surrounded by the Appalachian Mountains and George Washington State Park and just in time for the fall foliage.  Maryland was the beginning of Scott and me trying to remember what we learned in 7th grade history (Mason-Dixon Line, etc).  Pennsylvania was rolling green hills, full of old farm-houses, bright red barns and dairy farms.  I was fired up when we passed an Amish family, along with their horse and buggy cruising down the highway.  Did you know the Amish are offended when you take pictures of them?  I didn't learn this by experience, don't worry.  Thank goodness for internet and especially Google.  We finally made it to New Jersey, which I had been waiting on for days.  I consider myself a "Jersey Junkie" with all the Jersey shows I watch (Housewives of NJ, Cake Boss, Jersey Shore, Jerseylicious, Jersey Couture, you get the point).  I had a few stops I needed to make, first and foremost Franklin Lakes.  I made Scott drive me through this little town that creates so much havoc and drama, and hopefully on the way home we will make it to Hoboken NJ to get some Cake Boss cake...I LOVE CAKE!!!  Then on to New York, and finally Connecticut.  Connecticut is by far the prettiest state I have ever been through.  The towns are so quaint & charming...I don't think anyone who lives in this state has any worries.  Their lives are picture perfect!  We spent Sunday night in Meriden, CT and finished our trip Monday as we pulled into Boston a hour before our appointment.
Rhett had an appointment to do the Urodynamics Test today, which basically gave them an idea of what damage has already occurred.  The test measured what kind of control his bladder/bowels had and if there was any damage to either of these, as well as what kind of nerve function Rhett had below the waist.  We went directly back to the procedure room where several nurses were preparing "the study" as they referred to it.  By the time the test was underway, there were 8 people in the procedure room including a neurologist, urologist, and two pediatric doctors from Mumbai.  A catheter was inserted, and an electrode (aka large needle) was put in place to measure nerve function and muscle control.  Long story short, Rhett has full control over his bladder and bowel for now, and no nerve damage was detected.  This is GREAT NEWS!    As Rhett would react to different things, the nurses would get more and more excited at how well he was doing.  He had his own fan club, it was very sweet.  They all fell in-love with Baby Rhett and his famous cheeks.  Scott and I were laughing because each time one of the doctors came into the room they each would tell us we needed to take him to Hollywood because he was so beautiful.  Either they were really in-love with our perfect and precious baby and could see what I have been saying all along, or they were just blowing smoke up our rear…either way I felt better.  Apparently, little blonde babies are few and far between up this way…especially babies with little squishy cheeks!
After the procedure was complete, both the Urologist & Neurosurgeon sat down and spoke with us about the results and their opinions.  Both doctors could not believe how strong Rhett was.  They both agreed that for a child his age with this condition, it was amazing he had enough strength & control to stand on both legs, sit up on his own and could not believe he was on the verge of crawling.  The neurosurgeon said he would have never diagnosed Rhett with a tethered cord if he had not had the bump on his back.  Thank goodness for the bump!!!  His left leg is slightly slower than the right, but this wasn't anything they seemed to be concerned with for now.  Boston Children’s is a Harvard Med School hospital, so they research this condition extensively.  We sat down with both doctors and went through 100's of questions pertaining to both sides of the family.  They believe this is a genetic condition, so we were told that anyone of our brothers or sisters would need to take precautions for future pregnancies...basically, needing to take 10 times the normal dosage of folic acid.  After answering every question imaginable we were told they felt Rhett would recover from this surgery with no complications and we would just need to keep an eye on him watching for sign of possible re-tethering, and we would be back in 3 months for another urodynamics test to see where we are after the surgery.  So Day 1 was successful and we left there with great news and relieved that was no nerve damage so far!!!  YEAH!!!!  Next on our list, check into our new digs while Rhett is in the hospital.

You can't always get what you want...but if you try sometimes you might find... you get what you need!

The time has finally come…we are making our journey to Boston. The trip I was so determined to make was finally here and I was almost in a panic like “Oh crap what am I getting into?” My feelings towards going were somewhat confusing.  I was a combination of anxious, relieved, stressed out and scared to death. I had no idea what I was going to be hit with during this visit, but I knew it couldn’t be any worse than the last doctor’s news. So here we were, packing for what could be the beginning of many trips to Boston or we were packing for the trip from hell that would leave me pissed off at the whole city and possibly hating the whole Northeast sector of the country depending on how this one appointment went. So how does one pack for this? As stupid as it sounds, I was quite concerned with what I was going to wear to meet this doctor. I needed Rachel Zoe there to guide me through my wardrobe selections, because I may have possibly been channeling all of my stress over Rhett’s surgery into one stupid outfit decision. I know it sounds ridiculous, but I think it is like being mad at someone and taking your anger out on some poor random person…that was me to every article of clothing I owned. Who really cares what I wear?  Nobody!  So after I physically assaulted everything in my closet, had yet another emotional meltdown, I was finally packed and ready to go.


We arrived in Boston Sunday afternoon, so we had some time to burn because Rhett’s appointment wasn’t until Tuesday at 8am. We figured we might as well make the most of Boston while we were there. For me this meant checking out the city, shopping etc… For Scott, this meant eating his way through the city and leaving no clam chowder left behind. And for sweet little Rhett, well this was a whole new city for him to sleep through. We blazed through “The Freedom Trail”…ate…walked 17 miles to see the USS Constitution (which we discovered was closed).... ate…spent the afternoon in Cambridge… ate…carried Rhett in his stroller up 4,000 flights of stairs (b/c evidently the city of Boston hasn’t discovered the magical invention of elevators)…and ate some more. It was a much needed day to take our minds off what had previously been consuming every conversation we had and what seemed like every thought that ran through my head. Every time I would look at Rhett in his bouncy contraption or whatever, all that would come to my mind is “this could all be gone and it is because of something I am doing to him”. I just needed one thing to go right for once during all of this…I needed this surgeon to be some sort of miracle worker and make all of Rhett’s problems go away. All of my eggs were in this one basket and if it didn’t go as planned, I had nothing to fall back on…this is #1. If #1 fails then what?

So here we are Tuesday morning making our way up what seemed like the steepest hill and the longest walk of my life. There were millions of things running through my head and I had no clue how this would end. We walk into the children’s hospital and make our way up to the neurosurgery wing. It is in a VERY OLD part of the hospital and almost resembled a mental institution…it was a little creepy, I am not going to lie. We finally walk into the waiting room and there were toys everywhere, I almost felt right at home. Madagascar was playing on the TV and a little boy was driving the little peddle cars all over the waiting room…you would think this would make you nervous, but it was very calming in a weird chaotic way. We were called back and (“Dr G” I cannot spell her name to save my life nor can I pronounce it correctly so we will go with this) Dr G’s Deputy Surgeon (not sure what exactly a deputy surgeon is either) aka sweet little lady who made Rhett laugh non-stop, began to go over all of Rhett’s medical history with us. She wanted to know everything that had happened since Day 1. No one had ever asked me this before…this is strange. They actually want me to tell them what I know…hmmmm. Next she did a full exam of Rhett. She checked everything including his arms, legs, muscle strength, reflexes, bottom, bump (fatty tissue) head, shoulders, knees and toes, knees and toes. Then Dr G came in repeated the exam and began to ask more in depth questions. Scott and I just looked at each other like”what is this?” No one had ever done this before. Dr Doom and Gloom never even looked at Rhett’s bump much less did an exam like this. This doctor actually looked at Rhett and did not just rely on what his MRI scans told her…she was actually interested in him and wanted to know what we had noticed was going on as he was growing. She then began to tell us what she was looking for, and how different things on Rhett’s back showed signs of problems. All things I had noticed before and was never really given an answer as to why it was like that. She even explained why his bottom didn’t line up with his spine…I wasn’t told “well, we don’t know if that is related to this issue", like before.  It is, it is completely related to this issue and finally someone knew why. I suddenly felt like we were making headway with all of this.

She then got into what exactly was going on with Rhett and what needed to be done to solve the problem. Yes, Dr Doom and Gloom was correct in his diagnosis and yes, he was correct surgery was the only option. However, that was the only thing that they seemed to agree on. She advised that we wait to have the surgery until Rhett was at least 6 months old. He is in a growth spurt now and several things may change in these few months. Doing it now, as Doom & Gloom suggested was not a good idea…she said only if it were a medical emergency would she even consider doing it at this stage. OK so we know when we are doing surgery…but now comes the important part. What is going to come of this surgery? And how was she going to remove this tethered cord without paralyzing our child? She makes it all sound so simple when she says “We will remove whatever part of the fatty tissue than does not involve his nerves. If nerves are involved in a particular part of the tumor, we leave that part alone. You never want to cause nerve damage if you don’t have to.” So why didn’t we think of this before? Dr Kevorkian (aka Doom & Gloom) was prepared to take a pair of hedge trimmers and start cutting (sacrificing) our poor baby’s nerves doing who knows what kind of damage along the way just to remove all of the fatty tumor. She explained leaving parts of the tumor did put him at risk for his cord to re-tether (30 % chance), but a second surgery would be far less complicated as the one he was facing. She explained she has done this exact surgery 100’s of times on babies from all over the world, and “I know exactly how far I can push things before I know it is time to stop.” These were the magic words I was looking for and she seemed to hit the “magic number” of surgeries performed. I don’t know about you, but 100’s as opposed to Doom & Gloom’s 12, is a no brainer.

As she told us about previous surgeries she has done just like this one and what the outcomes were, I felt a sense of relief come over me. The dark cloud that had been hanging over my head was finally starting to disappear.  She had actual examples of what could possibly happen, not like Doom & Gloom’s response of “Well I can’t give you an answer to that, I haven’t actually seen the outcomes and there are so many variables.”

She explained that in 1/3 of her patients, nerve damage does surface as the child gets older. Worst case scenario is he may need to wear braces on his legs for a while to help with walking. Doom & Gloom/Kevorkian’s worst case was Rhett being paralyzed from the waist down. I will take braces any day…braces are nothing…hearing braces as opposed to paralysis was like a kid on Christmas morning. I wanted to jump up and hug this woman! She did mention that as a result of all of this, Rhett will most likely never play professional sports and he will be a little clumsy. I don’t care; I think clumsy is cute…who doesn’t love a clumsy kid? PS if anyone ever mocks my clumsy kid…you will see the ugly side of me come out, this is your fair warning. I will pounce on you like a fat kid pounces on cake.

Dr G also mentioned that Rhett’s spinal cord had never properly developed and was “open” as opposed to “closed and cone-shaped”. This didn’t seem to be a big deal to her, as she has dealt with this many times before. She said she would simply graft the end of his spinal cord to make it the shape it should be. No big deal, I will just finish it out…I build spinal cords everyday…who doesn’t know how to rebuild a spinal cord? Who is this woman and why weren’t we sent to her in the beginning? She is the answer to our prayers! Dr. Kevorkian/Doom & Gloom never mentioned this before. What if we let this guy operate on Rhett & he didn’t even fix one of the major problems??? So it is settled…she is obviously the only person who is operating on our baby. This is the only person who knows exactly what is wrong and doesn’t want to go in there all scissors happy and take out everything and every nerve in her way.

Our next step is to have an urodynamics test performed on Rhett to test his bladder/bowel muscles. This will give them an idea of where he is prior to surgery as far as how much control he has and it will provide them with something to base his future tests on. Dr G will check to see if there is a doctor in Dallas who can run this test on a child Rhett’s age. This is where she asks “Why Boston? Why didn’t you go to a neurosurgeon in Dallas?” We told her we wanted the best and we hear she is the best. Scott told her the story of Dr Kevorkian/Doom & Gloom and she LAUGHED! She laughed like “what a bunch of amateurs”. She knew of Doom & Gloom and her reply was “well, he is rather new to this.” No kidding…only having done 12 of these surgeries is definitely new. “New” is a much more polite way of saying what I was thinking…I am sure you can imagine what I was really thinking and no it wasn’t “new”.

She told us she had been at The Children’s Hospital of Boston for 20 years. She has seen all sorts of spinal cord defects and has operated on babies from all over the world. This and the fact she answered EVERY question we had with actual answers as opposed to “it varies” was all I needed to set my mind at ease (as much as it could possibly be at ease). We were given percentages (Scott does well with percentages) and real life examples of outcomes. She never gave us a smart ass answer like “Well, I’m not going to go into the art of surgery with you”. She did get into the art of surgery; she actually went into what she was going to do once she got in there. Let’s be honest here Dr Doom & Gloom, can you actually call it an art if you are making paper snowflakes out of a babies nerves? I don’t think so. So to say what you do in this instance and only in this isolated type of surgery is “art” is like saying my singing in the shower is Grammy worthy. Dr. G explained things to make sure we understood exactly what she was saying and we were clear on what we were getting into. She was friendly and personable and exactly what Scott and I were looking for. I could not possibly have asked for someone to make me more comfortable with what Rhett was facing. It has to be a certain someone that a mother will turn her new baby over to, and trust she will take care of him and make sure nothing goes wrong. I am confident we found our “special/certain someone”.  What I wanted and knew wasn't possible...was for all of this to magically go away.  Instead, what I am getting (exactly what I have been praying for since this whole thing came about) is for Rhett to be placed in the best hands possible during this surgery.  You can't always get what you want, but if you try sometimes, you get what you need!  I know without a doubt we have found this person and it is now out of my control...I have done all I can do, I gotta let go.

Rhett will be in the hospital for 4-5 days and afterwards will stay in Boston for 2 weeks to recover. There is a risk after spinal cord surgery of infection and/or spinal fluid leakage. Keeping him in Boston for that 2 week period will allow her to monitor him and make sure he is healing properly. I would be such a nervous wreck, taking him back to Ft Worth and trying to determine what is normal and what isn’t? If that didn’t guarantee a prescription for Prozac, I don’t know what would. That and the fact you cannot put a baby on an airplane for 4 hours that has just had a major surgery on his back. Can you imagine trying to get a baby through airport security while having to keep him still and carrying him around on a pillow? DISASTER! That will not be happening! This brings me to the #1 question regarding recovery. How exactly do you keep a 6 month old still and flat for 2 weeks? Doom and Gloom didn’t know the answer to that. Dr G. was honest and gave it to us straight…”He is going to be in pain/sore and on pain meds. He isn’t going to want to move for a little while after surgery.” OK, I didn’t want to hear that, but at least she answered my question and was honest about it. She was the only person to give us REAL ANSWERS to all of our questions, even if they were sometimes stupid questions.

After his 2 week recovery I am certain he will be ready to take on airport security and most likely a 4 course meal. When we found out we would be in Boston for a few weeks, I told Scott that clearly the best place for Rhett to recover was Cape Cod or Nantucket. Apparently I was forgetting New England and Texas have extremely different climates. October/November in Massachusetts is nothing like Texas, and if I planned on spending November in Nantucket or Cape Cod…it would just be me & the Gordon’s Fisherman (the fish stick guy) bearing that miserable weather. So we are going with Plan B; which is finding a short term lease on an apartment (which is comical in itself) or some sort of Hotel/Condo-like situation. Just so we are all clear on this when I say apartment, what I really mean is a grand total of 350 square feet. How do these people live like this? That is the size of our bedroom! They can fit a whole apartment in 350 sq ft…where will we put all our stuff? Hell, I need a closet bigger than that! Plus, Scott has to work in our little “hut”. Can you imagine the therapy we are all going to need after we live in a 350 sq ft apartment for 2 weeks in the snowy freezing winter, while Scott is trying to work and Rhett is recovering from major back surgery? Someone call Bravo I smell a new reality show! Especially if my mother comes to visit! Maybe I will blog about it…

So Rhett’s surgery was set up today. It will be Wednesday, November 3rd. We will have to go out a few days early for pre-op and so on and hopefully everything will go perfect during surgery. We are not sure if we will be home by Thanksgiving, but if not we can have a Thanksgiving just like the Pilgrims and Indians had. I am already dreading the freezing cold winter and snow that is going along with all of this, however I do see a fab pair of Tory Burch snow boots in my future. To Bostonians, snow/brutal cold is nothing…to us Texas folk that is like a prison sentence (in a 350 sq ft cell). On the bright side, maybe all the snow will make for a great Christmas card. I find it interesting I am already thinking about Christmas cards and I haven’t even had time to get Rhett’s birth announcements out. That among 10,000 other things on my list of what I HAVE to do before this surgery.
 I am just relieved to know we have found an awesome doctor to do this surgery and she has a much better plan of attack. Baby Rhett is such a little blessing and I would move mountains to make sure both he and Reid were given everything they deserve (please note I said deserve not want). Scott and I are so grateful for everyone and everything. I get so many e-mails, texts and phone calls every day and it is so comforting to know we have such great friends and family that care so much about Rhett. It seems like such a little thing, but hearing “You are never given anything you can’t handle” is like a little pep talk before a big game. And trust me, I have needed all the pep talks I can handle lately and welcome whatever advice/reassurance you got!  What you have been through makes you who you are… after this Rhett is going to be one tough little baby and his Momma may be one crazy lady., but we will get through it...we always do!  I am sure when the surgery is all said and done we will finally have our “Happy Ending” to go along with our storybook life!  I will continue to blog as things happen. And as we all know…something around here is always happening!

Just a Note...

Ok Friends and Followers, I know I am late on getting the blog about Rhett's appointment posted.  I am working on it, I promise.  I had no idea so many people were interested (and for some addicted maybe?) in my cheesy little blog/group therapy session, but I am glad you are reading it.  I am happy to say the next blog won't be a tear jerker, it is a much happier story!!!  So far we have found what we were looking for and the answers to our questions.  I feel so much better about things and as Nichol put it, it sounds like a weight has been lifted off my shoulders and my voice lost 100lbs.  I was sounding a little depressed huh.  And I really didn't mean for the last couple of blogs to be soooo depressing...I had no idea it would actually make other people cry...sorry!  I thought I was the only one getting all emotional over this and it turns out I was making everyone else an emotional wreck as well...but that just means you care and I love you for it!  My phone/computer has been blowing up with everyone wanting to know what happened and where we stand...I was waiting until the surgery was booked etc before I posted anything.  So details are still somewhat being ironed out, but I just wanted to let you know I will have it up Thursday and maybe even have some pics up too.  Stay tuned...

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!!!

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?