Friday, April 16, 2010

Still in ICU

Time is a funny thing. Some days drag on. Some days zip by. The baby is on day five in the ICU. His lumbar drain was removed this morning. He still has the drain in his head. Right now he is asleep after fighting a long day of pain. He was taken off pain meds for awhile. He is back on them now.

So what happened Tuesday? We checked into surgery at 6:45am. Big Tito and I had an hour to help prep Tito for his surgery. This included wiping him down with a special chemical, getting him into a gown, and distracting him with toys. At 8:00am prompt, the anesthesiologists wisked Tito out of my arms and disappeared. We were taken another direction and given a pager. At 9:15am, we received a page that the surgery was in progress. Every two hours we received updates. It took several hours for the surgical team to remove a large tumor from behind Tito's left eye. Unfortunately, the tumor originated on one of the nerves of the eye. The "3rd nerve" has been compromised. The baby seems to see. He just cannot move the eye. Both the eye and pupil remain fixed. Time will tell whether this damage will reverse itself.

The tumor could not be removed completely because it involves too much of the dura (the lining between brain and skull). The doctors removed as much of the tumor as they could. Then they grafted some soft tissue from another part of his head to seal the hole in the dura that was removed along with the tumor.

The rest of the 7 hour surgery involved a bone graft reinforced with titanium mesh to seal off the brain from the eye socket. The baby has NF 1 and was born with a portion of his skull bone missing on the left wing.

As of right now, the baby is doing well. I got to hold him today for a long time. He liked that. Once a room becomes available out on the floor, Tito will move.

We are comforted by everyone's support, prayers, and visits.


Colby family said...

we are praying for your little family.

NicodemusLegend said...

Thanks, as always, for the updates. You continue to be in our prayers.

Anonymous said...

This has to be such a trying and scary time. Looks like you are in good hands with your doctors, I pray they will make baby all well.

You both are totally inspirational. Hugs

Anonymous said...

We are so glad this is done and behind you. We pray god will heal Tito fast and allow you 2 to rest. We were in California during his surgery and texted with Pastor for information. Can't wait to see you all and hold our big guy and let him know how proud we are of him and you guys to, I am so glad we have you as friends your amazing people, thanks for being who you are. We will pray for all your needs and then some, have safe travel home and we look forward to seeing you again and bible study. Give eachother a hug and kiss from us since we cannot right now. God less
Jeff and Penny