Time off for good behavior

Hi everyone,

Peter's now completely off Lasix (a diuretic), potassium and sodium. This leaves him with only two diuretics, aspirin and thyroid medicine. Today we called for the results from his blood test for thyroid which was taken during our latest cardiology appointment. He had not been tested for thyroid levels since August. It seems the pediatrician may recommend reducing his dose! Our understanding is that there is probably nothing congenitally wrong with Peter's thyroid gland, but the chylothorax washed so much protein out of his body that his thyroid could not function properly. Now that his diet is normal, his thyroid may be getting back to work. We'll hear more next week.

We also talked to the gastroenterology clinic about his feeding tube. Their protocol requires it to be left in for four months after its last use. This was a bit of a downer. However, we can talk to the doctor about it again when he's back from vacation. We're prepared to grovel.

Finally, we spoke with the pulmonology clinic and got the green light to reduce Peter's ventilator pressure support to the absolute minimum. (It was 18 with a PEEP of 6; now it's 15 with a PEEP of 6). The next step, starting next week, will be "time off for good behavior"--Peter may be disconnected from the vent for 30 minutes twice a day. Each week we can tack on an additional 30 minutes to each period. We are very excited, and Peter would be too if he knew what was in store. He's getting bored of staying in the living room all the time, and gets very curious about where we go when we leave the room.