Tuesday, October 1, 2013

To Go Home or Not To Go Home...That is the Question!

Levi is much improved in many ways.  He seems to be almost completely healed from the tonsils and adenoids surgery.  He just has a bit of residual discomfort when yawning or coughing.  As we hoped, this did cure his breathing problems.  He can breathe easily and quietly now, even with his mouth closed!  I wonder if his throat was sore much of the time before the surgery.  The tonsils were always red and bumpy.  I'm hoping this also leads to better swallowing in the future, so he can begin to eat some things by mouth.

Even though he now has a GJ tube that feeds directly into the intestines, and it was my impression that he should tolerate feeds much better, he has not.  Within two days after it was placed he was gagging and vomiting again.  I was concerned that the tube had slipped, but the doctors were not concerned.  On Sunday he had a wonderful day, sitting up on our laps, holding his head up, interested in his surroundings, but then for most of yesterday he was constantly whining, gaggy, and did end up throwing up with "coffee grounds".  I decided to take him outside to the playground, and that perked him up substantially.  He had a great night, we both had the best night's sleep since the surgery.

I'm so ready to go home, but I don't want to get there and have to come right back.  I'm still concerned about the GJ tube.  Thankfully Dr. Mangalat is back on service today, and she knows him very well.  I plan on asking if she will take an x-ray to be sure the tube is in the correct position, and I have many more questions for her.  It occurred to me yesterday that at home he was no longer tolerating continuous feeds, and maybe that's why he is still having issues.  Maybe he needs bolus feeds instead, in which case we would have to revert back to the g-tube (which wouldn't hurt my feelings, for some reason I really don't like the GJ tube!).  So I'll be waiting with bated breath to see her today!

On a very bright note, the seizures have decreased dramatically!  We see one here or there, but they are all but gone!  It must be due to getting his entire calorie and fluid requirement. I couldn't be happier about that!


  1. Just keep praying and God will give you the direction that you need. Gods timing is seldom early but its never late.

  2. Very true! Thanks for the encouragement!