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.
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