Meeting with the Neurosurgeon

Today, Josh, Theo, and I made the long drive to Peoria to meet with Theo's Neurosurgeon, Dr. Lin.

We were extremely confused when Dr. Lin told us last week that he didn't want to do the shunt surgery. And we also didn't understand why we were not told that Theo had the potential to have tissue loss (brain damage) if we waited until he was six months old to perform the aneurysm repair surgery. We felt that it would be best for us to go and talk with Dr. Lin to avoid any more miscommunications.

Dr. Lin checked out Theo and told us that we need to continue to watch his soft spot and if it gets hard or swollen then we need to call him immediately.

Josh asked Dr. Lin about the shunt surgery and why he didn't think it was necessary. He told us that shunts are used mostly for decreasing pressure in the brain, which is different then having extra fluid in the brain. Theo has extra fluid, but his pressure is fine so a shunt won't help right now. We brought up our concerns about his tissue loss and Dr. Lin told us that there's very little chance any more damage will be done to his brain and that he's seen kids recover "just fine" from similar situations.  He, and the other doctors, believes that the aneurysm caused the tissue loss so now that the aneurysm is mostly taken care of he should not have any more tissue loss or extra fluid building. 

After the Radiologist do their next surgery, Dr Lin will reevaluate Theo and see what he thinks the next steps are. Once the soft spot closes there can be increased pressure too so we need to watch for that too.

I then asked Dr. Lin why we weren't told that there was a potential for tissue loss when we were first talking about options for surgery. He said that they were more concerned with keeping him alive and that there was a much higher chance of him not making it through surgery if we did it when he was a new born. I understand their position, BUT we should have been told about all the risk ahead of time.

I then asked him why we weren't told about the tissue loss when his office called to give us the results of the MRI from 11/27. He said he didn't know why, but it was mostly because they were only looking at the ventricles and the aneurysm size and not anything else.

I get it. I really do. Their main priority was keeping him alive and I'm grateful for that, but they should have told us. They should have told us that he had the potential to have tissue loss if we waited to do the surgery AND they should have told us that the damage had happened when they saw the MRI. I know that kids can recover from tissue loss, but not all do. I'm scared for what is to come for little Theo.

I'm glad we went and talked with Dr. Lin in person. It's a long drive (almost 4 hours round trip) for a twenty minute conversation, but we need to be on the same page if we are going to understand what is the best course of action to take.