Thursday, May 30, 2013

If Tomorrow Never Comes

If tomorrow never comes...The impact of those words are becoming more evident to me, and I feel like I understand them more than what I should for my age. This month of May has shaken me to the core and I feel like devestation and heartbreak can be seen at every angle. A lot of things have happened in just the last month that it's hard for me to even comprehend it, let alone write it all down. Some of you will be finding this all out via blog or facebook, and wonder why I didn't tell you all individually. Just know it's a lot easier being able to say this all at once, rather than have to retell & relive everything over and over. It all started with deciding on our own that we wanted to do the VNS (vagal nerve stimulator) therapy for Kannon. It is about an hour long surgery, and doctors will go in and place a small device under his left collar bone to help with his seizures. As you all probably already know, we are going about this very cautiously, making sure this doctor who is doing the surgery knew everything they needed to know about Kannon, and that they did their homework. So in the process of getting his surgery scheduled we decided we better get an MRI of his brain, and the entire spine since it would be a lot harder to get one with a metal device implanted in his body (which we will have to go to TX for if we ever needed another). On May 8th (a wednesday) we had an appointment with Kannon's orthopedic doctor. He came in the room and told me that Kannon had to have back surgery, there was no other way around it. That if we didn't then Kannon wouldn't live another 4-5 years at the rate of his scoliosis and growth of his lungs. They talked to me about the VEPTR surgery. They said it would be 3 hours long, Kannon would have an incision from his neck down to his bottom, and be placed on a ventilator. The VEPTR rods would start at the neck and anchor to both sides of the pelvis. In my mind, I'm immediately thinking, "there's no way this is going to happen, not to Kannon". I asked him about the recovery time for Kannon, and he stated it's different for every patient, and would probably be longer for a kid like him. I asked his doctor (in tears) "How would I feel as a mom, throwing my son into this 3 hour surgery, then him potentially not coming off the ventilator, and us losing him, knowing I could have had that 4-5 years or even more? Sometimes it's quality of quantity" and he proceded to tell me that in his profession "it's quantity over quality"...So immediately when I left there I started seeking a second opinion. Not necassarily a "second opinion" persay. I know something needs to be done eventually with his spine and throracic cavity, even if it is VEPTR rods...but at his age, and at his size, I didn't see it being the fit for Kannon. So our family sought out other hospitals online and are currently awaiting out-of-state approval for the number one pediatric hospital, and the number one pediatric orthopedic hospital--Children's Hosital of Philadelphia. Which has a "Thoracic Insufficiency Syndrome Center" and not to mention the doctor who invented the VEPTR rods. (yeah I know, right?)
The reason we want to go there is because they have ALL doctors, pulmonoligsts, orthopedic, orthopedic surgeons, neurologists, radiologists, everyone, who sits at a table together and goes over each patient, one by one, to see if this surgery is the right thing for them and whether or not their bodies can handle it. Kannon needs that, he doesn't just have one medical problem, there is a multitude of things that need to be looked out for. So cross your fingers, and say some prayers, because that's where we want to go and honestly I believe that's where Kannon NEEDS to be. 

One week later, May 15th (wednesday again) I got a call from Kannon's neurologist's secretary who wanted to make an appointment for us to come in the next day to go over Kannon's MRI images...I got an uneasy feeling and asked her "Is everything okay? We haven't had to be called in for images before" and she said "I'm sure if it was urgent she (the dr.) would have called you"....I got an eery feeling and knew from experience this wasn't just going to be any regular appointment. I still remember when mom got that same call to make an appointment for the next morning, and it was that day they told her she had stage 3 melanoma cancer. I just knew. Something was not right.

Tomorrow finaly rolled around and they called Kannon's name to come back into the clinic room. They sat us down, and Kannon's doctor shortly came in. 

And just a side note-- this doctor isn't just any other doctor. She is awesome. HANDS DOWN. You can tell there is something beyond just the "dr to patient relationship" there. She loves Kannon. 

I jumped in and said "I hope you have good news...we have had enough bad news lately!" She asked what all had been going on and I began to tell her all of it. I told her the orthopedic situation and even said "I know you're a doctor, but I hate it when someone tries to put a time limit on Kannon, to me it isn't a prognosis, it's a goal. Mom was given 4-6 months on a few separate occasions and every single time she beat it out. I believe only God knows when it's time." She agreed with me and told me she definitely believes in "quality over quantity" and always centers her treatments for every patient she has around "quality". She continues by saying "I wish I did have better news for you, and it breaks my heart to have to bring you in here today."

She went through Kannon's MRI of his brain, one by one, and explained to me the anatomy and what was going on. Everyone's brain has two layers, gray matter on the outside, white matter on the inside. Kannon has very little white matter anyways, a lot less than the norm. She went on to explain to me that Kannon's brain isn't getting protein it needs for his brain to function normally, so the little white matter that Kannon does have is in the process of deteriorating, also called demyelination. They compared the new brain MRI with his last one (which was when he was about a year old, and it didn't show any signs of demyelination) and have found that the rate of the deterioration of Kannon's brain in comparison is pretty significant. She told me he will begin to lose function of his muscles, including extremities, and then spread to other major organs, she also said the compromise is usually respiratory (the brain will stop telling the lungs to breathe), and given Kannon's history, it might be that way for him. And after all of what I told her about the orthopedic situation, I still asked her "how long do you think?" and she called me out on it, and said "honestly, I don't want to put a time on him either, but given what I see on his MRI, it's pretty significant."

I don't even know what else to say at this point, besides to ask you all for your prayers. We are still trying to let everything sink in ourselves...Just the thought of not having Kannon in our lives just devastates us, but I know in all this hurting, God has a plan. And on a side note, one thing that eases my mind a little is that when it's Kannon's time to go to Heaven, he is going to be greeted by one hell of a grandma.