Rewind

Toby had a rocky weekend. He is still on a monitor at night which tracks his heart rate and the oxygen level (saturation or "sats") in his blood. 95 - 100 % is good. Under 92 is not good. His alarm is set at 89. Saturday and Sunday nights, his sats were consistently low, sitting in the 90 - 92 range with many alarms. Monday was taken up with phone consults with doctors, a chest x-ray, and visit to the pediatrician. Having ruled out illness, it seemed likely that the problem was caused by the recent stoppage of his diuretics. His damaged lung tissue has a tendency to hold fluid and not work as well; the diuretics are used to counteract that. After a dose of a strong diuretic Monday evening, his sats were back up to 94 and above with far fewer alarms. No illness is good news. But it means we have had to restart his regular diuretic dosing twice daily. I am happy that it can be dealt with so simply but unsure what this means for the plans that were in place to start weaning him off oxygen. More wait and see, I imagine.

Toby also weighed in Monday and -uh, oh- he had lost 10 ounces. We had reduced his tube feedings again last week. He seemed to be eating more, but evidently it was not enough. So we have had to add that back into the schedule also. It feels a bit like the reduced schedule was a nice vacation, but it's over now and time to get back to work. Friday, he will see the pediatrician for another weight check and once over.

None of this has slowed Toby down at all during the day. He likes to stay busy and scoots all over on his rear as far as his tether will let him. When he wants to go further, he turns around and pulls on the cord with both hands to stretch it to its limits.

He has also started to get up on his hands and knees a little. So progress there! Plus he has managed to pull himself to standing on the side of his crib a couple times. He's getting quite strong.

We are also giving him credit for his first sentence last week. He signed to Naomi: "up", "please", "book".
This boy loves to be read to and God has blessed him with many sisters who very kindly indulge him.

And yes, we found something he likes to eat besides crackers. Chocolate chips. There's hope for the boy yet.