~ Ryan in his cute new pjs from Uncle B & Aunt CeCe ~
On Tuesday, Sidney and I took Ryan to Omaha for an appt with the neurosurgeon. I was glad to have Sidney with me because while the doctor and I talked, she pushed him around in his wheelchair. Let me just say, in this situation, a 15 minute nap is much worse than no nap at all. Sidney was a huge help because Dr P and I talked for quite a while. We both agreed that if this is going to be Ryan’s last surgery, we might as well be aggressive and do everything we can to calm seizures because we are not doing this again. Last shot, last chance, last call. Well today the surgery scheduler called and said we are only doing one surgery, and it will be Monday, February 6 at UNMC. The total hospital stay should be 3-4 days in the ICU.
So what exactly are we doing….I think you all know, or sort of understand, what we did in November 2010. Ryan’s seizures have continued to get worse over the course of his short little 8 years and after everything else being a failure, we finally went in and removed almost all of his right frontal lobe during a ten-day ICU stay. They also put 88 electrodes directly on his brain to monitor seizures which is the most the surgeon had ever put on a patient. From that monitoring we know he has several hot spots in his left frontal lobe that started acting up after the right frontal lobe was removed. He also now has three craniotomies (big pieces of skull that were removed and then put back with plates and screws) and a very big scar from ear to ear. On February 6, the doctor is going to go through the same incision and craniotomies to cut the front 2/3 of his corpus callosum which is the bundle of nerve fibers that allow both hemispheres of the brain to talk to each other – and allows the seizures to spread. There was talk of a second surgery two days later – putting electrodes back on his left frontal lobe while the surgeon already has him exposed to monitor where the seizures are exactly (in the first surgery) and then possibly cutting some of the nerve fibers in those hot spots to try to decrease that seizures activity as well. The surgeon must have talked to the neurologist who probably didn’t like that idea or thought it wouldn’t help because as of now they have decided to simply stick with the corpus callosotomy. This will hopefully decrease the size of the seizures he is having – and the amount too. Right now he has anywhere from 20 to 200 seizures every day, and while some of them are small, some are so big they cause him to thrash around and fall to the floor. Because there is no hope Ryan will ever be cured of the seizures, we are simply trying one last thing to reduce the size and number of seizures so his quality of life (and ours) will be better.
As of February 6th when this is all said and done and sweet little Ryan is sleeping in the ICU, we will be able to say we have tried everything possible. It’s a very daunting feeling to know this is the end unless the medical field finds something else that could possibly give us any hope of stopping seizures. This will be his fourth brain surgery (and fifth surgery) in 15 months. Drugs, diets, herbal/nutritional supplements, two lobectomies and the device implanted in his chest have all failed. But we’ve both always said we will try everything we can to give Ryan the best quality of life possible and this next surgery is the one last trick we have up our sleeves in that quest.
I can’t really begin to describe the sense of grief I feel. This has been a very long road and while there have been so many blessings along the way that Travis and I both recognize, it’s been a journey marred with many tears of frustration and sadness. I don’t know that I can adequately put into words what my heart feels right now. There aren’t really words to describe the profound emotions I am feeling. It was not easy to have a very gifted, highly respected surgeon look me in the eye and say “you have been through more with your child than most people will ever experience”.
Several people have already asked what they can do to help us. You know me, I have a very difficult time accepting help from others but over the years have also been very humbled by the generosity we have received. It’s not easy to say we can’t do it all and be completely independent in handling these situations, but I’m slowly learning I can’t be an island and continue to push others away which is something I’ve become very good at these last few years. I’m trying very hard to take care of myself so I can be healthy emotionally, mentally, spiritually and physically. The road is long to get where I want and need to be but I’m getting started finally. So to admit we will need help in four weeks is hard, but I’m going to do it anyway. If you want to help and are wondering what you can do for us, I think the biggest thing is simply pray…for the stress Travis and I are both feeling not only for this surgery but also for a variety of other things we are facing right now, for the older kids who understand way too much and feel the effects every day of having a medically unstable brother, for Ryan to not be in pain post op and for infection and other complications to stay away. Gift cards or meals for the older kids are always nice to ease the load for Travis’s mom who will probably be here with them. Gift cards for gas, fast food that is close to UNMC, books, magazines, candy, snacks are nice too. Or meals when we get home with Ryan. I have one week of vacation time I can take off – was hoping for two but I had to use a week when Ryan was hospitalized in November. Travis has plenty of vacation and will probably just take a week off, and I will change my schedule around to work weekends for a while so one of us is home with him during his recovery before he can go back to school. If you want our address or phone numbers, please email us and we’ll respond – firstname.lastname@example.org
I haven’t done a good job of thanking each of you personally for your support. There are several of you who come to mind who have really tried to walk this road with me and I have pushed you away not allowing very many people to get close to me in the last couple of years. I’ve really trained my mind to falsely think I can handle it all, be completely independent and don’t need help from anyone when in reality all I’ve done is isolate myself. I hate to say it, but it’s true and I can finally see it and admit it. I certainly don’t deserve the love you have all shown us, but please know I am thankful. I hope in the months and years to come I am able to bless others in the same way we have been blessed. This journey may be hard but you all have been much of the beauty we’ve enjoyed along the way.