Shands Round 2

*** This was originally posted on Facebook as a note on 12.14.10 just before Owen got out of his shunt replacement procedure.


I posted at 5 am that yesterday was pretty uneventful but the truth is the past couple of days have been pretty busy.


I knew Sunday was going to be a bad day when it started out. We woke up and got ready for church but one thing after another went wrong and it was 45 minutes into our church service before we were even ready for church so we missed it - and I was very upset. I even said - today's not going to be a good day but little did I know how bad it would be.

We had lunch plans after church to meet some family friends in Dothan to have lunch with them so we headed on to Dothan a little early. On the way Owen had a seizure sitting in his car seat next to me. I noticed it immediately and began videotaping it with my cell phone as I'd been instructed to do to show the nuerologists when we returned to Shands for his regularly scheduled visit. This was the second time he'd had a seizure since we'd been home the first was very similar on Tuesday, twitching around his lips and eyes and then he threw up when it was over. The seizure at 11 am on Sunday was the same twitching around his left eye then he threw up. Afterwards he looked around for awhile before falling asleep. He slept really hard - through the time he should have woken up for lunch.


While we were at lunch we woke him up to feed him (something we very rarely do) but it was past time for him to eat again. After he finished eating and I was holding him he started having another seizure. Our friend timed it and it lasted about two minutes. Afterwards he was pretty pale so I called his neurologist. I was given the most contradictory instructions from the nuerologist, first I was told to give him his phenobarbital med early (now) at a slightly higher dose. Then I was told to take him to the hospital to get a phenobarbital level checked then I was told they wouldn't just check his phenobarb level for us so I needed to just take him home and give him his medicine then I was told if he had another seizure to call 911 and have them transport him to Shands (even though I expressed how far away we were and that they wouldn't transport us to Shands). By the time I was done with them we were almost home and I called our pediatrician Dr. Sherrell and he ordered a phenobarb level for us at Jackson it was waiting on us when we got there and I had my mom bring us the medicine so that immediately after they drew his blood I could give him his medicine. It was around 4:30 when I gave him his meds and it was about 20 minutes later when he seized again in my arms and turned blue. We ran over to the ER where he had a fourth seizure. They assessed him and gave him another dose of phenobarbital via iv to get it in his system faster. We were told his phenobarb level was 24 when we got him to the hospital and his nuerologists want it between 35-40. His body metabolizes it so fast though that his level sometimes dips low like that.


Transportation was arranged and he was life flighted around 9 pm on Sunday to Shands. Ed and I were on the road shortly after and we arrived by his side around 2 am (EST). When we got here we learned that he'd had a fifth seizure and had stopped breathing. They started him on a new seizure medicine to try to prevent the breakthrough seizures he was having. We watched him closely until around 6 am when I finally dosed off on the cot next to his bed. Ed had to sleep on a couch in a waiting room down the hall.


On Monday, they checked his levels again they were up to 33 (which is pretty normal for Owen). Around 8 am they came and connected 16 wires to his head and wrapped them in gauze to keep them secure and then they set a camera up on him to record his movements while they recorded his brain waves through the EEG. We were told they would keep that on for 24 hours. Nothing much else happened Monday. We waited all day by his side for any hint of whether or not the EEG was picking up seizures we couldn't see. We were told that he would have an MRI on Tuesday (it was scheduled for 9 pm but we were told they would do it much earlier). We signed consent papers for general anesthesia and then around midnight we tried to go to sleep sharing the one person cot beside Owen's bed. It was a very long night with very little rest.


Today, Tuesday, has been much more eventful. We woke up to Owen screaming while the technician was taking the wires off of his head. He was not happy, he's hungry & tired. He's been NPO since we left Jackson Hospital on Sunday. I held him to comfort him while they took all of the tape and wires off his head. Then he was whisked away for an MRI. They would intubate him and put him under general anesthesia to look at his brain on the MRI. It was then they discovered his hydrocephualus was worse - a sign his shunt wasn't working properly. A doctor from the neurosurgery team came and tapped his shunt (they stick a needle into the valve of the shunt to get cerebral fluid - now came out - it was now more than apparant that there was a problem with the shunt). We were seen by the head of nuerosurgery Dr. Pincus - he was preparing to do another surgery to fix the shunt. Meanwhile his cardiologists came and did an ultrasound of his heart. X-Ray came and did 4 x-rays of his chest, abdomen, and brain. And the nuerologists (yes he has a nuerology team and a nuerosurgery team) came to assess him. We've seen more doctors today than I can count. Even the head anesthia doctor came to his bedside to talk to us about his second general anesthesia of the day. Around 3 pm they took him back for his shunt revision they call it. As I'm writing this Ed has just come over and said that he's out of surgery and doing well we are waiting for them to get him back on the floor and should be able to see him in about 10 minutes.


Earlier today there was talk of another embolization before we leave but then Dr. Pincus told us he'd prefer to wait if there wasn't a cardio reason to go ahead with the surgery - they'd like him to still be a little bigger before an additional embolization. Dr. Pincus said he'd like for us to do the shunt replacement then get him home for the holidays and re-evaluate in January. We're told by our nuerologist that they think the additional medicine they've started Owen on will help but he will likely continue to have more seizures. We will continue to pray. The cardiologists think we may be able to take him off of one of his heart meds because he's doing better. Praise God.


Well once again I wrote more than I intended but that's the whole shebang what got us here and what's happened since we've been here - it's much easier to write a note than to repeat it a hundred times and everyone wants to know and we want you all to know so you can continue to pray properly for Owen. We genuinely appreciate all of the support and encouragement we get from home. It really keeps us going through this whole process. We have such a precious sweet angel and we pray that you all are blessed - we have been.

Thanks for everything.

Jerica & Ed