I have to share this short story. Really its just a few lines. Owen has taught me faith which I haven't learned in three decades of being in and out of church. His whole life has been a testimony to God and his strength amazes me.
Our latest trip to the hospital was on Christmas night. It was the beginning of the end. Owen's shunt wasn't working properly again, the top piece and the valve were working but the bottom part was clogged causing the fluid to swell around his shunt. You could visibly see a huge mass protruding around the valve on his head. Poor baby was screaming in pain and Tylenol wasn't helping any. We left during Christmas Dinner (around 3 or 4 pm) and took him to Tallahassee Memorial Hospital to the ER. When he was being admitted the nurse took him into another room to get his weight. As she was handing him back to me he grabbed ahold of her necklace and wouldn't let go. At first I was taken back because Owen didn't grab ANYTHING except to wrap his hand around a finger and squeeze. He didn't grab for toys or pull my hair but here we were in the hospital in a strangers arms and he had her in a tight spot holding onto her necklace. While I was thinking about what an accomplishment this was for him she was trying to unlatch his fingers from her necklace and I began helping. It literally took both of us to pull his fingers away from and as we peeled his fingers back I saw what he had such a desperate hold on - it was a crucifix of Jesus Christ on the cross.
What a powerful moment. God I want to have a hold on you like that because I know that's the hold God has on me. Right now, through all of this he is holding our family tight and Owen knows him and desires him. I know not what the future holds but I know who holds the future.
That was going to be the end of this post and I was going to post this separately but I decided to just continue on - I hope you don't mind.
Keep Clinging to the Cross
Owen was in the hospital from Christmas Day until January 4, 2011 this last time from Saturday to Tuesday, a week and a half. The doctors originally said his shunt was clogged and that he had an infection in the shunt. They immediately removed his shunt and began treating him with antibiotics. Everyday I asked about the infection and everyday they said there was nothing growing in his culture - meaning no bacterial infection, maybe a viral infection. Day after day they said the same thing. On Thursday the pediatric intensive care unit doctor told us that he was doing great and if he kept this up he'd be in surgery on Monday and home by the middle of the week. Most of you know that Sunday Owen began having seizures, over 20 in a relatively short period of time and they intubated him and sent him for more tests. Ed had gone home Sunday morning and been at work in touch with us all day worried. I felt bad that he was working but I was there for Owen. On Monday morning his neurosurgeon was back from "vacation" he came in first thing and things sounded grim but he told us they would be doing another embolization on Tuesday and then they would go in and replace his shunt. He said, "I mean for things to sound as bad as they do." I immediately called Ed and Mom and they came on to Gainesville. A few minutes later the nurse said the doctor wanted to know when Ed would be here so he could talk to us together - a first. I knew something was bad wrong. I told them he'd be there in a couple of hours. About 30 minutes later as I sat alone by Owen's bed holding his hand the doctor and his nurse practitioner came back and the doctor pulled up a chair beside me. Without warning the words came, "We can't fix him. . . irreversible brain damage . . . we've done all we can do . . . " I just remember he sat there looking at me forever and I finally said, "I don't know what you want me to say." A little later he left. I cried so hard my face hurt my eyes burned I was so empty. I held Owen until after Ed & Mom showed up. I had to tell them the news myself. The doctors said we didn't have to make any decisions until Tuesday but that we had a few options. None were good.
We called the family in and made arrangements for our pastor to baptize him on Tuesday morning. We would remove the breathing tube that afternoon. The machine was giving him 20 breaths per minute and he wasn't taking any breaths on his own. They wouldn't wean him off the ventilator as they had always done, typically they'd wean him over a period of 4-24 hours. They didn't expect him to survive the extubation if he did we would just hold him until he passed, that was our understanding.
We braced ourselves for the worse. Owen did fine off the ventilator. Within an hour they had hospice lined up. Our pastors drove us home so we could rest and not worry about the road. His neurosurgeon said he would die from seizures because the aneurysm would keep causing more and more seizures. His neurologist says he won't die from seizures it will be something else that kills him. The neurosurgeon refused to place his shunt back in his brain. He said we were at a place where we would just be doing things to him not for him.
After coming to peace with everything and beginning to prepare for the end for Owen I had a revelation. God has been telling me since the VERY FIRST day that I found out about Owen's condition that "it's going to be okay." Why had I allowed doctors to change that conviction in me. Right then I remembered a doctor in New York who many people from overseas had used for VOG malformations. I immediately found his number and called and talked to his nurse. I had Owen's records overnighted and at first glance he said there was significant brain damage but he wanted to see a few other images from his embolizations. I ordered those and had them overnighted. I spent all day yesterday and most of this morning making arrangements for second opinions elsewhere. I had gotten an appointment for Owen at Children's Hospital Boston the number one pediatric neurosurgery center in the country only to find out that Medicaid won't allow him to be treated out of the state because there are pediatric neurosurgeons here in Florida. And there are a handful of pediatric neurosurgeons in Florida, but only two of those, to my knowledge can treat Owen's condition and one of the two have REFUSED to continue to care for Owen. I can't even begin to explain how gut-wrenching it is to have a sick child and to have the top center in the country lined up only to be told I'd have to pay out of pocket up front before he could be treated at all. What do you do?
We just keep clinging to the cross, just like Owen. Many have asked about the doctor in New York and he did call today. His recommendation was for us to have another baby. I don't know how that helps Owen but that was what he recommended. I've prayed for guidance and I know that God is still directing our steps. I know what the doctors are saying but I rebuke it in the name of Jesus. I believe that Owen will live and claim the works of the Lord. I believe in miracles, it's a miracle that Owen is still alive, he shouldn't have lived past the first few days. It's a miracle that Owen lived the first month, the second, third and fourth. It's a miracle that Owen survived the ventilator - as the doctors hadn't intended for him to. It's a miracle that Owen has been home an entire week now and has had NO swelling and NO seizures. Regardless of what happens to Owen, God has had his hand on our little man from before he was even born. Miracles happen everyday. Every moment I spend with Owen is a miracle in itself. I keep hearing God whispering everyday "It's going to be okay." And I don't know if he'll be okay here or if he'll be okay in heaven but I KNOW without a doubt that HE WILL BE OKAY.
Please continue to pray for Owen. We are asking specifically for God's will, healing, strength, guidance, comfort, & more miracles. I don't deserve this but Owen certainly does. Thank you all for your continued support. We love you more than we can express.