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?