Worst Case Scenario

Titus had all his scopes done this morning. In layman’s terms, they ran a flexible scope down through his lungs, a rigid scope down his esophagus, and an endoscopy of his esophagus and stomach.

This took about an hour, after which all three doctors came into a consultation room to tell us the results. And it was not news we wanted to hear. I could write a long list of issues they found, but it basically comes down to this. Titus has two obstructions to his airway that obstruct his breathing – specifically when he is asleep. And Titus’s lungs are not moving air like they should. The bronchi are very narrow or closed and when he breathes, oxygen is not getting to his lower lungs and he is not expelling Carbon Dioxide like he should.

The diagnosis is grim. The obstructions are not repairable and there is no treatment or medicine that can repair his lungs. Since this is the only baseline they have, they believe his lungs were born this way – and they cannot tell if it’s getting progressively worse, but the fact he is not expelling CO2 affects a lot of other areas in his body.

We have been presented with two options: a tracheotomy with a ventilator that will breathe for him to assist in expelling the CO2. This would be a permanent. It may prolong his life span some, but they do not know. However, having a vent will change his lifestyle (and ours) as we know it. It does not need to be done immediately – and they recommend it should be done in Dallas since you have weeks of trach/vent therapy and care to learn how to care for him.

The other option is to do nothing and let Titus continue as he is.

The doctors cannot make the choice – it is a decision we have to make. Either way, they do not feel his life expectancy would be passed his teens. Either way, one strong infection could easily wipe him out.

After two years of being in and out of hospitals and meeting with numerous doctors, we have never had to deal with news like this. No one has ever discussed life expectancy nor have we had to hear such devastating news. When we learned he was deaf, we were discouraged, but we knew there was so much he could still do. When we learned he was blind, we were discouraged, but knew there was so much he could still do. But to learn his lungs are irreparable and that his body is continuing to worsen because of the CO2 buildup and that there’s not much they can do . . . well, it just knocks you off your feet. But as Becky said through her tears, this surprises us, but is not a surprise to God. He knows, He cares, He comforts, He provides, He heals.

This morning before he went back in the OR, Titus was happy and playing. Before they took him away, I put my face in front of his and he smiled and put his hands on my face like he always does. They allowed us to walk with him all the way back into the OR, and Titus was happy the whole way.

And now, he is back in the Pediatric ICU, on the vent, and heavily sedated as they let him recover from the procedures this morning. He is De-SATing even on the Vent and just pulled his IV out. The plan is to keep him on the vent till tomorrow then take him off the vent and see how he does. But considering how he is doing now, we will see. I anticipate it being a very long night.

Here are our prayer requests:

At this point, we are ready to be home and have all our boys back under one roof. It's a 15 hour drive, but if God opens up a way for Titus to be careflighted to Dallas, that would be wonderful.

Becky and I need wisdom on future decisions. The trach/vent does not need to be done immediately and they recommend it be done in Dallas (but we need to get home first).

And we all need rest.