New and Noteworthy

Wow, I haven't posted in two weeks.  There is a reason for that.  It has been crazy here.  

James is drinking from a straw like a pro now so he is well-hydrated but his eating has slid into the abominable category.  We think he had some digestive problems with the mayo we put in his food as it had soybean oil in it (still has that dairy/soy allergy apparently).  It will probably take a week or so to get his digestion back to normal, but we are getting things moving through him again.  However, he has only eaten a few hundred calories the past few days.  We are trying to figure out a remedy.  This morning he gobbled up his prunes but didn't want his sweet potato.  We are going to get inventive when it comes to taste and hope that he will be back to eating sweet potatoes, chicken, and eggs soon.

James has been hitting some great milestones now that the tube is out.  He is army crawling all over the place and pushing onto his hands and knees a couple times a day.  He learned to wave and say "hi".  He also learned to throw and catch.  Here is a little video of his new accomplishments.

More soon.

With love.

Doing Better

James is doing better.  The hole is definitely closing and the skin looks so much healthier!  We finally figured out how to bandage it so that fluid isn't gushing out and there is no hurtful tape.  It has made us all much happier!  I may even be able to change it on my own when Mark goes back to work on Monday.

He is still struggling with eating due to the leakage, although it is no where near as bad as it was.  We'll keep you updated!

James likes to eat dinner with us because Daddy is funny.  :D

With love.

We're Tubeless...and Overwhelmed

It feels really good to have that tube out of our son's stomach.  But, we are stressed.

The hole is beginning to close and the area looks much better!  We are seeing new skin/fat growing there which is great.  But, it leaks like Ole Faithful.  It is 11 AM here and I changed his bandage 3 1/2 times already (one time I just added more gauze and tape around the side because the bandage was only 10 minutes old!).  The leakage does hurt and it has been hard to change the gauze on my own especially with James crying.  And it smells like our first PICU stay after James' first G-tube surgery.  That stay didn't go so well (frustrating nurses, a hard window ledge for a bed, a very-much-in-pain baby, and the tube eventually came out) and now I know the smell was from gastric juice.  That is why I am sitting here with chocolate while James naps.

We knew this wouldn't be an instant fix because it would take a while to close, but it is a little harder than we expected.  We can only get about 4 ounces in James at a time before it all just comes right back out.  So, back to high-calorie blends!  At least he wants to eat and drink despite the pain.  He drank three and a half ounces through a straw this morning - that's a record!  And he slept very well the last two nights, praise God!

So, we keep plugging on.  Things should be much better by the time the next work week rolls around.  And, luckily, next week my husband has a good schedule.  :D

After the Redskins loss.  :(  We didn't know yet the tube would come out the following morning.

With love.

James Got His Tube Out Today

Yup, the tube came out.  We did not plan for today to be the day, but it happened.  We are in shock still, but I will update you soon!

With love.