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.

Eighteen months and counting

Toby's 18 month checkup showed continued good health and progress. He gained enough weight to keep his nutritionist happy and continues to edge up toward "normal" on the chart. This lets us continue the process of decreasing the tube feedings and letting him learn about hunger and how to make it go away. He also saw his occupational therapist for a final consult about his feeding issues. She has given us some helpful hints about how to expand his horizons. Putting both together (hunger and hints), we have already had some small successes. Enough to give us hope for the future; maybe someday soon Toby will graduate from non-eater to just another picky eater.

Toby has also had success in the pulmonary catagory. He completed coming off the diuretics without any major problems. Praise God; he now has a much reduced daily drug routine. A breathing treatment morning and night, one medication morning and night, and one just in the evening. This is another one of those areas where progress has been so gradual, we only see how far we've come by looking back. Not too long ago, it took a chart to plan, organize, and track all that was required. Now it is simple enough to be almost thought-less. Just perfect for advancing maternal age . . .

The plan to wean off the oxygen has not gone any further. His pulmonary team decided to delay and do another test first since he continues to have episodes of "fast breathing" for which they don't have an explanation. Some time in October, he should be scheduled for a bronchoscopy. They will put a scope down into his lungs to see if there's any thing going on down there they don't know about. After that, we will be back on track.

Meanwhile, we thank God every day we look at this big, healthy child. The wonder never goes away.

A Patchy Story

Once upon a time, there was a small boy who needed to wear an eye patch.

He was not very pleased to hear this news.

This small boy was determined to rid himself of this eyepatch.

Eventually, he was able to convince his doctor that the patch was unnecessary, and there was much rejoicing.

The End.
(by Kathryn)