Last week we headed over to Seattle Children’s Hospital for Jackson’s 6 month eye exam. Because of the seizure medication he takes (Sabril/Vigabatrin) he has to have an ERG every six months. Our local children’s hospital does not have the capability to do this test so we drive 4 hours to the other side of the state to do it. The ERG tests the nerves of Jackson’s eyes. It entails putting him under anesthesia and is only about a 30 minute procedure. The purpose is to test whether or not Jackson has any permanent peripheral vision loss due to the medication.
Sabril has been Jackson’s miracle drug. Before we put him on the drug Kevin and I had to make the difficult decision between risking vision loss and taking a chance that this medication might stop the seizures that plagued our little one. It was one of those tough decisions that parents should not have to make, but the kind that many parents of special needs kiddos have to make daily. Jackson’s seizures stopped within 4 days of taking the medication. After 1 year and 5 months of watching our son seize, he was finally free. The elation I feel about this is not something I can write about. While he has had maybe 4 seizures since being on this drug that is nothing compared to the 10-15 he was having daily. Every day Jackson doesn’t have a seizure is a miracle day to me. It gives him a better chance at learning and progressing and that isn’t something you can put a price on.
Having said that, it was made quite clear to us by the doctor at Seattle Children’s Hospital that the seizure medication has done damage to Jackson’s peripheral vision. While I knew this was the risk, I still felt like the doctor threw a baseball into my chest when he told us. The damage isn’t catastrophic. Jackson isn’t blind peripherally. He has about 60% of what a normal person has. Things are more difficult for him to see peripherally but his forward looking vision is still good. The good news is that it won’t get any worse. The bad news is that it won’t ever get better, the damage is done. We took the risk and now Jackson will have to pay the price. I feel extraordinarily guilty. But I am also quite aware that the risk was worth it. Being in this position as a parent is ridiculous, infuriating, heartbreaking, and makes me want to throw dishes at the wall while screaming curse words. This is definitely not what I thought parenting would be for me. But it is. If I could call my Dad and ask for his advice I know exactly what he would say – “Well there isn’t anything you can do about it now Honey. You just got to move on with your life.” So that is what I have to do. Move on and celebrate every day that the seizures stay away, far away.
Now on to my Seattle Children’s Hospital rant! When I called to schedule this procedure I explained to the scheduler that Jackson has special needs, won’t be able to understand why he can’t eat (you can’t eat 12 hours prior to this procedure) and is absolutely obsessed with food. Therefore, please schedule us as early as possible. The time they scheduled us to arrive – 10:15 a.m.! That is not as early as possible. So we tried to sleep deprive Jackson the day and night before thinking he might sleep in long enough for us to just get up and go to the hospital. When did Jackson wake up? 6:00 a.m. Yup. Shortly after waking up the crying/screaming/why aren’t you feeding me yells began. So we quickly packed up and jumped into our car and drove around Seattle for a couple of hours trying to calm him down. Driving around Seattle in rush hour is about as much fun as walking on glass in your bare feet. We got to the hospital and checked in right at 10:15. We waited maybe 10 minutes and they took us back to the pre-op area. The nurse quickly saw us and got all the information she needed. This whole time Jackson is screaming with little tears running out of his eyes. I asked the nurse how much longer. Her response – “The anesthesiologist will be in in about an hour.” Say what?! I actually kind of laughed because I thought she was kidding. But she wasn’t. She explained to us that Jackson’s procedure was scheduled for 11:30 a.m. I was infuriated. Jackson is screaming, and at this point it is just plain cruel because he has no idea what is going on and all he is thinking is “I am hungry, why aren’t Mama and Papa giving me any food.” After making it clear to the nurse that we were VERY unhappy we took Jackson and started walking around the hospital for an hour. We went back to the pre-op room just in time for the anesthesiologist and doctor to arrive. We also let them know we weren’t happy. Off Jackson went for his procedure and off Kevin and I went to eat. We were also starving! After meeting with the doctor for the results of the test they told us to wait in the waiting room and they would page us to come back and be with Jackson while he woke up from the anesthesia. So we waited. And waited. And waited. I finally had enough and told Kevin I was done waiting and that I was going to go get our boy. The receptionist at the surgery desk didn’t seem too happy when I told her I was going to go back there and find my son. She was like “you can’t go back there” and I was like “watch me”. After a couple of calls and heavy sighs, like it was such an inconvenience, she said we could go back to the post op room. As if I needed her permission. We finally got our boy back and after letting him wake up for a while we were on the road home. I couldn’t get out of that hospital fast enough.
Hospital administrators who sit at their desks making up ridiculous procedures that benefit only the hospital should have to spend a day in that pre-op section and see what they are doing to the children they serve. Jackson wasn’t the only one crying. We weren’t the only annoyed and frazzled parents. When it is a hospital specifically for children, their rights and needs should come first. Our health care system is confined to rules, procedures and legalities. Even the littlest patients are falling victim to this absurd system. Next time we go to Seattle Children’s I am going to give them a sheet with MY rules for how my son will be treated and I will throw their rules in the garbage. We will see how they like that.
They always say that times changes things, but you actually have to change them yourself." — Andy Warhol