We’ve known for quite some time that we are nearing the end when it comes to medical interventions we can try to help Ryan. Today we saw Dr. Madhavan (neurologist) again in Omaha and had Ryan’s stimulator turned up for the last time. He said technically we can turn the stimulator up one more time but that would cause it to pulse at a very fast rate which would cause a lot of discomfort for Ryan so that really isn’t an option. We did spend a lot of time talking about what is next. What else is left to do for him? Over the course of his short eight years, we’ve tried over a dozen medications, multiple EEGs, hospitalizations to monitor seizures, intensive therapies, special diets, three major brain surgeries last November with three craniotomies and two partial right frontal lobectomies, numerous scans, placed a vagus nerve stimulator that has been turned up several times. So now what? We are running out of options, and we’ve known that for quite some time.
Over the years, our goal has never changed – to give Ryan the best life possible, free from pain. His quality of life is everything, and that is what guides all of our decisions. It’s not been easy by any stretch. This is a painful journey but so worth it at the same time because if you know Ryan, you know what a bright light he is in our world. I’ve said it numerous times and will keep saying it – he brings so much joy to our lives and we love him with a love I can’t begin to express. It’s just different with him and those of you who have special needs kids understand what I mean. I don’t love him more than my other kids, I just love him different.
So where does that leave us today? We were given three options:
1. Low glycemic diet: The short version is cut out/down on the high sugar carbs. This option isn’t a cure-all but something to throw out there we haven’t tried yet. We spoke with a dietician in the office today, and she basically said as long as he is getting three cans of Pediasure a day, this diet won’t work because we can’t cut out the sugar content in the formula. There isn’t another formula appropriate for him that will give him the nutrients he gets from these supplements. Ryan has such extreme food aversions that we can’t cut this out so instead she said we could always try cutting down on the amount of carbs he eats instead giving him more protein. So basically we are going to try getting him to eat more protien and cut down on his Apple Jacks and let him have more Cheerios (lower sugar content).
2. Try another medication called Sabril: I’ll tell you right now this is not an option. I think the doctor threw this one out just to give us more options but we are not interested. In 25-33% of patients this drug causes permanent vision changes such as loss of peripheral sight and/or tunnel vision. How do we justify putting Ryan on a medication when all the others we’ve tried have failed knowing we could cause him irreversible vision loss? Our goal is to increase his quality of life, not do something that could potentially harm him that wouldn’t even stop the seizures. The risks are just too high. He already has depth perception problems, fine motor skill problems in his right arm, wears braces on both legs and has poor balance, neglects the entire left side of his body. And add the possibility of permanent vision loss? No thanks.
3. Surgery….again: This is what I meant when I titled this post “the end is in sight” becasue we really are at the end of our options for Ryan. As you all know, Ryan had three very major brain surgeries nearly one year ago on November 8, 11 and 15. While it didn’t necessarily help decrease the number of seizures, it did make him calmer, happier, increased his concentration. It did a lot for his quality of life and even though it was hellish to go through, it was so worth it in the end. So what now? When we put the stimulator in, the doctor told us the only other thing we can really do is a corpus callosotomy. This procedure means the surgeon would go in through one of his craniotomies and go deep into the space between the two hemispheres to cut the nerve fibers in the front 2/3 of his brain. This would keep the seizures from jumping from the left frontal hemisphere where they are originating to the right side making the seizures lose some of their strength. Right now he has a lot of small seizures that tend to cluster and also some big ones causing him to fall over, fall off the couch. The stimulator in his chest doesn’t always stop them. There are studies out that show increased results in people with the vagus nerve stimulator and this surgical procedure. This is not a cure but an option to decrease the intensity and frequency of seizures; he will never be cured of epilepsy. It means a six-hour surgery and 3-4 days in the ICU. Of course there are the normal risks that come with surgery, but long-term, he should not experience any negative effects.
So, we have some decisions to make about what we are going to do although to be perfectly honest, the decision has already been made. It’s been a very emotional, difficult, grieving, crying kind of day. I don’t really know how to put what we are feeling into words, but I tell ya, it’s tough. Like Travis said, “when do we get a break?” It’s hard to think about putting Ryan through surgery again when he just had four surgeries in seven months. But, we both want to be able to say we tried everything, gave Ryan the best care out there, never gave up and gave him everything we’ve got. He’s worth it.
I don’t have a time frame for all this but we have to call the doctor’s office in the next week to tell him our decision then go from there. Ryan won’t need any more scans, EEGs, other tests. We will see the surgeon eventually then wait for insurance approval and a surgery date. From past experiences, it will be a few months before surgery is on the calendar and as always, we will keep you informed. I can’t say enough what your prayers, emails, comments here, hugs and encouragement mean to us. We couldn’t do this without all your support.
If you are dwelling on tomorrow – remember that tomorrow is God’s not ours.
Covering today in prayer will help you not cover tomorrow in worry.