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Wednesday, October 10, 2012


October 10th. 9 days after Jonah's 3rd open heart surgery. We are going home. We have been on quite the journey, even since getting to the 2nd floor.

Jonah's INR was right in the range they were looking for yesterday so we have the appropriate Coumadin dose planned for now. The team has found a local clinic that will continue to check his INR as instructed. The nice thing is that the clinic only does a finger prick similar to a blood glucose check to get the sample they need. We report the results they advise us on the dose.

Jonah received a blood transfusion yesterday with the hopes that it would help his oxygen levels. It was only slightly lower than where Jonah was pre op, but any attempt to optimize Jonah's oxygen carrying cells the better.
The plan as it stands has Jonah going home on a little bit of oxygen overnight. His doctors and nurses are confident this is only short term while Jonah's body heals and his lungs relax and adjust to the new blood flow. They are also very conscious of promoting a good quality life and given Jonah's age and activity level, wearing oxygen all day long isn't needed especially because it doesn't necessarily have a significant effect. As we've been on the step down unit, Jonah's team tried another medication indicated for the use of pulmonary hypertension. The idea was to give it to him and watch for any increase in his O2. If he did respond, the school of thought was that the pressure in his lungs was still too high, resulting in lower sats. Jonah's oxygen levels did not change. It was no better, no worse. A good thing actually! With that, having Jonah wear supplemental oxygen for a while as he recovers will help to shed extra fluid in his lungs. Over time, his sats may improve. They may not. If not, they likely contribute the lower oxygen levels to collateral vessels stealing blood flow from the lungs. Just to clarify, Jonah has not decompensated in any way; his sats are 86-92%, just not a consistent 94-97% like some other Fontan's. Jonah's team is comfortable with that going forward but want to help him heal without any rebound in pleural effusions.

We still need to go through rounds and the specific details of discharge. We could still have a long day ahead of us but the sooner we get Jonah home the better. He is frustrated. Angry. Wants nothing to do with being comforted by us. He's slowed down on the eating front. He's bored. He's tired of all the cords, cables, and tubes connected to him. And obviously, he's thirsty. Home will bring more distractions and hopefully a little more fun.

Keep you posted on our exit plan!

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