Santa's surprise

Hi everyone,

The removal of Peter's G-tube on Wednesday went very well and quite quickly. The gastroenterologist even took pictures of Peter's innards during the procedure so we could see. The inside is held together with tiny staples until it heals. Eventually the staples (they looked more like clips to me) will release and make their way into his diaper. Sorry if that's too much information.... On the outside of his tummy he just has a small wound the size of a mosquito bite. After the procedure Peter was bright-eyed and playful, and we noticed that he immediately wanted to play more with his feet. Apparently his abdominal muscles immediately felt more comfortable!

The same day the pediatrician called and said that based on Monday's blood tests, Peter could reduce his thyroid medicine again by half--from 25 mcg to 12.5 mcg. In another 3-4 weeks he can be tested again and probably discontinue the medicine entirely.

Christmas morning we noticed a little something new that had arrived for Peter--his first tooth! It's on the top, as Peter will readily point out to anyone who asks.

All he wants for Christmas is...

...his G-tube out! And it looks like Peter will get his wish. Yesterday the gastroenterologist (back from vacation) called and said he saw no problem with taking the G-tube out of Peter's stomach. The procedure is scheduled for next Wednesday, the 23rd. It is an outpatient procedure but Peter will be under full anesthetic while they go down through his esophagus to take out the inside part of the tube. We look forward to some pain-free tummy time in the near future.

Last week the pediatrician also lowered Peter's dose of thyroid medicine based on his blood tests. He said the test results seemed to indicate a functioning thyroid (hooray!), so we will be on a weaning program with that as well. We have all been enjoying Peter's two daily half-hour playtimes off the vent. We now call him the Portababy.

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.