The Merry Go Round

Since Jack's hospital stay in August we have been riding a Merry Go Round, up and down and around and around. Every day brings new highs and lows as we push forward for answers on how to help him. I've been reluctant to post because this is so emotional and I don't want anyone to view him differently due to his current symptoms. There is such a fine line between sharing information to those who care and protecting your child from judgement. With that being said, we will give an overview of where we are at in his story right now.

Jack will be admitted into Boston Children's Hospital on January 14th, on Morgan's first birthday! We are still waiting on his final schedule to roll out but he will be there a week or two. The clinic up in Boston is a Brain Malformations clinic with a team of doctors who specialize in everything from neurology to genetics. At this point Jack has two separate brain malformations, periventricular leukomalacia and mesial sclerosis, so this is a good starting point for us. We have gotten all of his medical records to them so there shouldn't be too much repeating of testing. We hope that the team up there can figure out if he does indeed have an underlying metabolic issue. And if he does not, they can explore what their opinions are as far as brain surgery. The belief that he has a metabolic issue comes from his pancreatic insufficiency and that his blood work is not normal. His blood work has several highs and lows in addition to several slightly askew numbers for anything from fatal metabolic disorders to levels of iron. Our Dr's here at this point give us a friendly wave and say "let us know what they say in Boston". They all readily admit that he is sick, they just don't know how to help him.

So, in the meantime we wait and hold our breath and thank God for another day. Jack is still having seizures, which could take him from us any day. He is struggling against his own body and is increasingly tired and grumpy. It is amazing how strong kids are and how they just "go" because it is in their hearts and souls to have fun and love. We are pretty good at keeping it normal on the outside and letting him crash behind closed doors. Now, if you ever saw us in and out of school or church you may not think this was true. We are praying for a smooth holiday season and 4th birthday for Jack. And as always, we appreciate all of your love, prayers and support more than we could ever express in words or actions. Please keep Jack in your prayers as he has a long way to go, keep praying for answers to come and smiles and laughs to never end.

                             Playing in the dirt is fun!

No Words

There are no words to describe how you feel when your child is not doing well. Whether it be milestones, problems with friends, illness and the list goes on. We've all felt that fear and felt the what if's, and it feels awful. There were also no words from a little 3 year old boy to any doctor or nurse during 5 days in the hospital. 5 days of anesthesia, 5 days of video EEG, 3 nights of sleep deprivation, 3 days with no naps, 3 sets of visitors that love him so much, 2 worried parents, 2 siblings missing him at home and one big unanswered question. How can we help our sweet boy?

Phase 1

I've been getting a lot of questions about the process of this whole surgery and people wondering when the actual surgery will take place. I will do my best to explain the process as I understand it and I am sure that it is subject to change. I feel like this whole thing can really be summed up as a "hurry up and wait" situation. Since Jack was born, he has had several medical issues that complicate his situation. There is a tab on the side of the blog listing his medical issues for those that are curious.

The underlying reason that we are in a surgical situation is mesial sclerosis. I explained it to Holly as an electical surge in a toaster and after so many of them your toaster is not good anymore. This is Jack's brain... medication is not controlling the electical surges and they continue to happen with no outward signs. This is physically damaging his brain and this damage is causing outward physical issues along with generating more seizures. If he did not have this scarring, we would continue to try medications and hope that we would find the right "coctail" that would work for him.

So, when is the surgery? We don't know... after this testing is complete the information obtained is compiled and reviewed by a panel of doctors and surgeons. This process takes about three weeks. They will then make a presentation to us with their findings and what they believe will be the best option for Jack. There are a few surgical options for epilepsy at this time and well as VNS. Our fears... we are of course terrified of the thought of surgery. We are even more terrified of not having an option to help him. For surgery to be an option all of the seizure activity needs to be originating from one side or one focal area of his brain. If seizures are coming from both sides of his brain, surgery will not be an option for him. Previous EEG's have shown that he has activity coming from both parietal lobes, and right temporal and frontal lobes.

What is the pre op? The idea of the pre op is to see how his brain acts during a seizure and to determine the focal point or points of the seizures. This means Jack will be stopping all of his medication that helps control his seizures. Some of the tests will be performed while he is seizing, others before and after. All of this combined with the brain mapping wil give surgeons all of the informaiton they will need to make a determination on his case. During this next week, he will undergo a five day video EEG, a PET scan, two SPECT scans and an MRI. I am still hoping and praying that we will be in the testing and the doctors will wonder why he's even there and give us a final determination that he's been healed. Reallistically we are just praying for a solution, for an answer, for anything to save our boy. Be it medication, surgery or a miracle we need something.

Tomorrow morning we will enter the hospital and Jack will be inpatient for five days of testing.  We are scared yet hopeful for an answer.  As you all can probably assume our family has delt with quite the emotional roller coaster over the past few months especially.  When I needed a little inpriation, Michael shared with me what lies in his heart concerning Jack.  We know this is true as we take another step in this jouney.

I see that boy and I know without question that;

He will be 17 years old, and 24 and 35 and 50

He will kiss and date and love

He will fight and win and lose

He will stand for something

He will be right and he will be wrong

He will fail and succeed

He will sail

He will build

He will know loss and struggle and will be the one who is strong for someone else the way we are strong for him

He will climb trees and mountains

He will one day have a family of his own

And most of all, he will do these things with a sense of strength that you and I and God have given him as this gift of challenges we are now facing.

He is amazing and I know without question that he will not be just fine. He will be great!

MEG

I have never once cried during the dozen or so times Jack has been put under anesthesia and wheeled away from me, now all of that changed. We did our first test in the first phase of Jack's epilepsy surgery on Thursday. This test is called the MEG or Magnetoencephalography. It is my understanding that there are only a handful of these machines in use nationwide. It is the latest and greatest brain mapping machine. It is supposed to measure the brain's magnetic fields that occur when we do any function ie. talking, moving etc. Combined with MRI imaging it gives the surgeons precise information on where the seizures are coming from in his brain vs where speech, memory and other key functions originate. With this precise map of his brain they can more accurately remove the section that is causing the epilepsy and allow him to maintain as much normal function as possible.

We arrived at 7:30am at the hospital with our sweet boy who had to fast for this test. Fasting is not fun for anyone, I don't care who you are! This is one of the many tests during this process that requires him to be put under anesthesia. If anyone has ever watched their child be put to sleep, it is heartbreaking. He screamed and cried and then just all at once, went limp. Michael and I kissed him and told him we loved him and he struggled and moved his arms. We then just had to walk away, that part is always so hard. There is something different about his face when he's sleeping under anesthesia. It's not this peaceful sleeping boy that I could gaze at all night. I don't know exactly how to describe it, but it's just different in an uncomfortable way. As soon as we left his side, the silence was deafening and I just started to cry. This surgery is so real now, so tangible, so scary. The possibility that someone may remove a part of his body, a part that is so perfectly imperfect, a part that I created; this idea I struggle with.

Then the wave of relief, when the waiting room door opens and they called our name to come see Jack. He was sitting up, groggy but refusing to open his eyes. We tried everything and he just wouldn't open his eyes... and then they offered him a prize for being such a brave boy. That did the trick, what kids won't do for a treat or a prize. He picked out a Cars record a book, which I thought was a great choice! We can't wait to record Michael's Mom reading the story. Now we wait, it will be about a month until we find out the final results of today's testing. I asked questions to the nurses and techs tying to lead them into telling me some results and all we could find out is that they were able to obtain good data. This leaves me with the mixed emotions of great, I'm glad they got what they needed and heartbroken that it most likely means he continues to have seizure activity even when we aren't seeing anything. I always go into these tests thinking maybe one day someone will say he's fine and we've been blessed with a miracle of healing. So until that happens, I will keep praying and hoping and most of all just keep loving this wonderful family.

How we got here...

There are certain moments in time that change your life forever, shape who you are and who you will become.  These moments for me remain like Polaroid snapshots in my mind, so vivid.  I can remember the sounds, the light, the smells, the feelings and everything about these times… good and bad.  I have as we all do, several of these moments. This one begins in June 2011. It was just another day; I went to get my hair done while Michael stayed with the kids.  Holly at the time was almost three and Jack was almost 18 months.  I got home and the kids were still napping so I decided to make the best of my time and go run a few errands.  Before I left we decided to peek in at them. As we got close to Jack’s door there was a banging noise coming from his crib.  I don’t remember even having to see him to feel my heart sink.  Michael grabbed him and yelled that he was burning up, I ran and jumped in the bath and began to run the water.  And then, I saw his face… blue, swollen, eyes rolled up, tongue hanging out, and covered in a foamy fluid.   I thought he was going to die.  I just remember holding him in the bath stroking his hair, praying to God and trying to hold it together for my two year old who was anxiously peeking around the corner.  I finally heard the sirens and knew he would be okay.

For Jack, this was the first of many seizures.  This one was a febrile seizure which comes from a high temperature.  But contrary to popular belief, it’s not the temperature that causes the seizure it’s the rate at which it spikes.  His seizures evolved into complex partial epilepsy with secondary generalization. Which means a quick spacey stare, an unusual arm jerk, some bed wetting, frequent night waking and a list of other things are seizures for him.  He also has seizures where he becomes unconscious, rigid and his eyes roll back.  Things that trigger his seizures are fatigue, sickness, being over tired, fever, heat (living in Florida) etc.  Jack is at the point where all of the seizure activity has and is physically damaging his brain. He now has mesial sclerosis, or scarring of the hippocampus which is in turn causing more seizures.  Medication is not helping him and sometimes the side effects of medications add on to his struggles. It has been explained to us that as time progresses so will his seizures and we fear that one day epilepsy will win and take him from us.  SUDEP, Sudden Unexplained Death in Epilepsy.  Jack has a 1 in a 150 chance of dying during a seizure and it is the leading cause of death in persons with uncontrolled epilepsy.  Anyone reading this that knows Jack, knows I call him my one percenter.  I can’t tell you how many times I’ve heard “Well, this only happens in 1% of people”.  1 in 150, well I feel those odds aren’t good for us.  Two years ago I had no idea what epilepsy was or how it would change our lives.  I thought people had seizures, managed them with medication and carried on with their daily lives. Man was I wrong.

Now being in a position where his brain is being physically damaged from seizures and he is caught in this cycle of more seizures and more damage we need to get his seizures to stop. We have been told that he may be a good canidate for surgery.  So, removing a portion or half of his brain to save his life seems like a good option to save our son.  We’ve gotten second and third opinions and all say the same, which is comforting on some level.  In just a short time, Jack will enter into pre-op for his epilepsy in an attempt to cure him.  As scared as we are, we find hope with this surgical option to save our sweet boy.

Sitting here I am still baffled by how we got here and amazed at the strength of my little man and his amazing big sister.  Yes, he deals with constant therapy and doctors appointments, procedures and his daily physical, emotional struggles.  But Holly also deals with these things and remains kind, loving and patient.  We have been pretty private with Jack's story up until recently.  We have now decided to open up our journey to all of you for several reasons.  We could not have gotten this far or faired this well if it wasn’t for the love and support that we get from our friends, family and church.  We would also like to spread awareness and education about epilepsy and help others who may at some time be in our shoes.  I read a quote recently “You wonder why I want you to spread awareness when your child doesn’t have epilepsy.  At one point, neither did mine”. So, whatever your reason for visiting this blog and for taking this journey with us, we appreciate your support and love more than we could ever express in words.