May 25th – Backwards


Remember those 140 grams he gained over the past few days? Well, he’s lost them at today’s weigh in.

This is a big reason why I don’t like to get too excited. Cautiously optimistic, but rarely overly excited.

He’s back to 8.4lbs which is what he weighed on 5/22

I wouldn’t read into thinking we’re depressed, we’re really not.
We are tired, concerned, and confused, but we’re looking at the end results which may take a few more weeks.

Sunday morning the nurses noticed milk leaking from his g-button site. An x-ray was ordered to make sure the tube was in the correct location. It still was. A few hours later his nurses noticed that his g-button seemed loose. This is usually due to the ballon that holds the tube in place being low on fluid. It’s supposed to hold 5 CCs, but it only had 4 CCs. The nurse re-inflated it. (See diagram below)

How a G-Button/Tube  Works
How a G-Button/Tube Works

Later today the nurses were inspecting it at around 3PM when they noticed the g-button was loose again. This time he was down to 3CCs in the balloon. Keep in mind this balloon is not supposed to lose water. The surgeons were paged to inspect it. It took about 3 hours before the surgeon arrived. He decided to let the nurses continue to monitor it and add fluid when necessary. The surgeon who performed the procedure would look at it in the morning and make a decision.

"Hi there"
“Hi there”

His feeds have remained the same which are 30mils by mouth and 45mils over 2hrs during the day, then 25mils an hour at night.

Within a few days, possibly weeks he’s scheduled to have a sleep study at Texas Children’s Hospital in Houston. There’s a strong likely-hood he may remain there as some of the staff at McLane have hinted that if they can’t find a solution soon we may want to transfer him for a second opinion. The doctors at McLane have been seeking additional opinions too, but so far none have been able to explain his situation.

That’s it for today.


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