Hard Decision Time

This morning our medical dream team met, despite the Hurricane and shut down of mass transit here in Boston.  Here they are discussing Oliver's case.  Andrew snuck a picture from behind our door.

Here is what came from our mini-surgery conference.

Oliver's left anterior temporal lobe will be removed.

A portion of Oliver's left frontal lobe will be removed. This will require another cut through his skull and another bone flap. This is to enable the surgeon to get to the tissue.

The anterior temporal lobe can be removed with minimal danger. However, part of the frontal lobe that may need to be resected is the in the “eloquent cortex.”

When you map most peoples' brains, their sensory and motor strips are in the same place. So you know if you remove tissue in that area you might damage the use of their tongue, or eyes, or face, etc...

In folks with TSC (because of the tubers), sometimes things are not exactly where the neurologists expect them to be. That means Oliver's motor strip may not be where it is expected. They may not even be able to find it!

During the surgery, a team of doctors trained to map the brain will attempt to find these very precious areas. We are praying they will find them so they aren't damaged or removed.

There is an area of his brain that (the doctors believe, but have to confirm during mapping) controls Oliver's tongue and face. If they remove this area, it could result in a serious disability. In a worst case scenario, Oliver could need a feeding tube and/or have severe speech impediments.

So when faced with this possibility we've decided to leave that area, and come back for it in 6 months if we have to. Perhaps getting rid of the other hot spots will clear up the seizures completely, or enough that we won't feel the need to take out this extra special area.

It feels heavy to make these decisions. To go through this again in 6 months would be hard. Dr. Duhaime put it this way. Oliver has a 50% chance of being seizure free. Is that probability worth losing the ability to eat? What if he still has seizures and has right side facial weakness, speech impairment and severe feeding issues? We do not want

Dr. Duhaime feels there is a reasonable possibility that by taking the other areas we can hit a “home run” and see the seizures stop. That's the miracle we hope for....

Of course, with this surgery there are risks similar to those of the first surgery. Infection, swelling, all kinds of complications...As Dr. Duhaime said, “it is a brain and we never exactly know what is going to come out of the other side.”

Overall, we feel good that we have a clear plan of what needs to come out. We are choosing a conservative plan.

Dr. Duhaime said she usually uses a team from Philadelphia to do the brain mapping, but they can't make it tomorrow due to the storm. They are very experienced with children. The team here is also quite good, but they don't have as much pediatric experience and haven't worked with Dr. Duhaime before.

At first I felt worried with this, but my in-laws reminded me that the local team is going to want to prove themselves to Dr. Duhaime, and she is probably going to push them hard to perform well. In the end, our trust is in God and His plan. We have so little control, and whatever comes out of the other end of surgery will be a blessing- even if it isn't what we expected- or the miracle we had hoped for. Our view from here is so limited that we rarely even know what to pray...except for the seizures to stop. At least that seems clear!

Oliver's surgery slot time tomorrow is 11AM. That means he could actually go into surgery at 10:30, or as late as 3 or 4. Kind of the same deal as surgery #1. This is a huge hospital, so everything doesn't always go as planned.

Dr. Duhaime said the surgery itself would take 4- 5 hours. Of course, they have to prep him (1 hour or so) and map him, so we are assuming it will be a long day.

She will sew the bone flaps in at the conclusion of the surgery. She said she's never had one dislodge during 25 years of doing this, so that helps ease our minds a bit.

He could wear a bike helmet at times when he is playing rough or at preschool. It will take 3–6 months for the skull to fuse fully back, and the next 2-3 years for full healing.

Another surgery would not be possible in that area for another 6 months, although obviously we hope that won't be necessary!

Please pray for Oliver's safety during the surgery, and for Dr. Duhaime and her crew. They are working so hard for our son. You can also wear your O-Team shirt tomorrow and send us a picture if you haven't already!