Saturday, April 24, 2010

Home at Last

We are now home and are taking care of Tito as he heals. His eye is still very red and it is discharging what looks like blood. At the sight of this, we became worried, but were reassured that it is normal. It is normal to shed bloody tears after what he gone through, it is a metaphor for the struggles that Tito has had to endure.

He is also very happy. Coming home to the familiar after his stay at the hospital brought him a deep joy. He squealed at the site of his crib, at his bouncer, at sight and smells of home. Remarkable.

The grandeur of life is in the living. In the act of taking delight in the familiar and even in shedding of tears of blood.

Tito has brought of us joy as well even in the middle of his medical trials. His love never wavered. I wonder if that is why Jesus called us to be like children.

The masters of living are those people where living means being a beginner, seeing all as if seeing it for the first time. 

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.

Wednesday, April 14, 2010

It is strange to say that the Doctor is adding the bones back to your baby's skull. We have had the surgery that we have been waiting for so long for. Tito is doing well, but there is still a question if he will have sight in his left eye. It took about 7 hours, like the staff had warned us. Tito is doing well in Intensive Care and his nurses have been wonderful. It is tough to wait, pray, and be present, but that is all we can do. 

The details of the operation: We started early in the morning, 6:45am, with Tito happy as a bee in a valley of columbines. His parents full of dread. The staff was great and compassionate. Lace washed with wipes of a special cleansing. Then they took him to be gassed and have the IV set. We then waited. His grandmother, my mom, was with us. His grandfather, Lace's father was with us. They updated us when the operation started, and we waited. Then Pastor James showed up. Then we waited. We talked about everything and nothing. They found a tumor behind the eye. We worried. We waited. Lace and I went back to the Ronald McDonald House and to run some errands. As fate would have it, we got paged that the operation was done. We rushed back to meet with his doctors. Then we waited. From the time we handed our son over to the anesthesiologists, 7 1/2 hours had passed. We got the report from the craniofacial plastic surgeon, Dr. Gruss. He said that it went as planned. The neurosurgeon, Dr. Ellenbogen, gave us his report on the surgery. The main worry is Tito's left eye because the pupil remains dilated and unresponsive to light. He might be blind in the eye. We will not know for a few more days. So we are stll playing the waiting game. We are still so glad for the care he has received.

Below is Daniel's story. It was a surgery by the same team that helped Tito. I am so grateful.