Day 13 – Roller Coaster

So we are wiped out but wanted to post an update.  Thank you for your prayers!

Since the last post, we had a second emergency repair (12/16) to fix a leak at one of the surgical sites in his GI tract. They also added a JP drain which allows any buildup of fluid and some air to drain out a tube in his abdomen. The tube passes thru his skin to a suction bulb. The nurses can then drain the bulb as needed. The surgical team also reinforced all of the surgical sites at the last surgery to allow some expansion of the GI tract without tearing of the intestines.
The reason that Zachary was having ruptures in his GI tract was because air was escaping from his ventilator and going down his esophagus into his stomach. His stomach would start to distend because the air would not be able to escape.
One reason that air was escaping is because his trachea is really really small. His tracheal tube connected to the ventilator is the smallest that is manufactured. Even with this small size, the tube cannot go far enough into Zachary’s trachea without letting air escape.
Another cause of the escaping air is that Zachary has complete tracheal rings.
The nurse practitioner described it to us this way: We need to understand what is going on with Zachary’s trachea before we can work on his heart. We are at a work stoppage until this is repaired. We are unsure of the date of this surgery since Christmas is Wednesday. He is currently stable with his trachea but he will have little ability to grow.

Zachary is going to have 2 tests done tomorrow (12/23) in radiology. The first test is a GI contrast study. We are asking you to pray that they do not find any leaks in his GI tract. The second study is to perform a CT scan of his trachea. This will give the ENT doctor and surgeons the information they need to repair it. Please pray for a clear picture of Zachary’s trachea.

God is good and He remembers us!

I would be amiss if I did not post a picture!

Merry Christmas!!