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?
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!
