Saturday, September 28, 2013
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?
We don't know. As a result of all of this, the last three years of blood tests, x-rays, MRI's, hospital stays, anesthesia and tears and we still don't know how to help him. Just this year alone, Jack will have spent weeks in the hospital, to date 9 days of anesthesia, and daily medications that would kick most of our behinds. Just since our discharge he's changed medications three times and had on average four Dr appts a week. I have to say, our kids are amazing. Holly, Jack and Morgan, they are the strongest part of our family.
His week of testing showed most of his seizure activity coming from the right side of his brain, which is what we thought. Once off of medication, he was having seizures on average every thirty minutes. Sometimes Michael and I couldn't even tell. The Dr went back and reviewed the video of his seizures with us to show us some of his seizures that we didn't see. And it was shocking, it was a 10 second pause in kicking his leg while watching tv, or a longer pause when talking. Our hearts were broken to see all of these examples that would make us second guess any movement or pause. The bright side is that medication seems to be cutting these seizures down so that they aren't as frequent as what we saw in the hospital. So, the answer is maybe. Surgery may be able to help him.
During this month of waiting we've gone back to our genetisist and regular neurologist who along with our pediatrician feel that he has some underlying metabolic disorder that may be contributing to his epilepsy. The genetisist said that she's almost positive that there is something that is just not text book and recommended that we go to either Miami or Boston Children's Hospital. The compliction is that Jack's pancreas does not produce any digestive enzymes and he does not digest or gain nutrients from food without medication. This combined with several other systemic issues means that surgery may not be a cure. And, as parents... we can't imagine removing some or half of his brain to have it not be the cure for him.
During this month of waiting we've gone back to our genetisist and regular neurologist who along with our pediatrician feel that he has some underlying metabolic disorder that may be contributing to his epilepsy. The genetisist said that she's almost positive that there is something that is just not text book and recommended that we go to either Miami or Boston Children's Hospital. The compliction is that Jack's pancreas does not produce any digestive enzymes and he does not digest or gain nutrients from food without medication. This combined with several other systemic issues means that surgery may not be a cure. And, as parents... we can't imagine removing some or half of his brain to have it not be the cure for him.
At this time we have been contacted by Boston Children's Hospital and they are interested in his case. They have a team of doctors in a specialized clinic for kids just like Jack. We are now working with them to set up a block of appointments and are hoping for an answer or a cure. We hope that even with my lack of updates thus far, you continue to pray for and love Jack... he needs it more than ever now.
Tuesday, September 3, 2013
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!
Subscribe to:
Posts (Atom)