The inevitable comedown - a mixed bag

Ford was reintubated this morning.

While his breathing wasn't getting markedly worse his daily x-rays showed almost total left lung collapse. This time the decision to put him back on the ventilator wasn't to help him breathe so much as inflate the collapsed area to prevent infection. If you recall, over the last 6 months Ford has frequently suffered from pneumonia because the sticky, fluid-laden sections of his lung are attractive to bacteria. With his immune system repressed to keep his body from rejecting his heart the doctors are anxious to keep him clear of any potential infection - which will hit him much harder now than in the past (and it was bad enough then, if you remember).

While we understand the risk/benefit balance here we're still pretty upset to see him back on the ventilator. He was just starting to vocalize again and hearing him laugh and cry was unbelievably uplifting.

So where do we go from here?

The short term plan is to keep him intubated for the week and recruit the left lung enough to give extubation a second try. The hope is that we just jumped gun this weekend and given a few more days with his new heart Ford's body might be able to adjust. But we've been in this boat before - for most of the year, in fact. So the hurry-up-and-wait scenario has lost a lot of its lustre. Then again, the other options involve surgeries and are pretty invasive. So wait and see is the easy choice.

Despite the changes Ford seems to be holding his own. Not only does he treat the breathing tube as though it's not even there, he spent the day wide awake and full of smiles - happily kicking his legs and playing with our faces, even sitting up in my lap for an hour, enraptured with the new perspective on the comings and goings in this room. It's clear he really doesn't know or care about what we feel he's missing, as long as there is someone around to pat his bum and talk to him - and his simple joy in the world is remarkable to experience in situations like these.

So we are looking at another month of ups and downs as they try to wean him off his ventilator dependency. The estimate is mid-July, and if nothing has resolved or changed by then we will revisit the surgical options. One is putting in a tracheotomy, which is a breathing tube in his neck that bypasses his nose/mouth and is a much more stable long-term option for keeping his lung inflated. The other is stenting open his left airway, which is still experiencing a mild amount of compression despite the transplant and, however unlikely, might be enough of an impediment to allow for the collapse.