Wednesday, April 7, 2010

18th day

To All:

Hello again, it's me!  We are continuing on our journey heading into the 18th day at Phoenix Children's Hospital.  

This week, we tried to take Ethan from drip tube feeding to feeding him four ounces at a time (bolus feed). That didn't go well (reflux; aspiration; discomfort; etc.), and today he lost more weight, so as expected we are on to the next step.  Here's the short version:

1.  We are now under the care of a Pulmonologist (breathing/airways) to add to our list of specialists. 
2.  Tomorrow (Thursday) morning at 8:30am, Ethan is going to be put under general anesthesia for the third time and undergo a bronchoscopy in which they will put a tube down his airways and look around and take biopsies to see if and how much he is aspirating and look for any other issues.
3.  On Friday, he will be undergoing a Gastric Swallow Test, in which they put a dye through his feeding tube and watch on some kind of magical device while his stomach digests the food.  They want to see how fast/slow he is digesting and where it's going.  We will be checked into Nuclear Medicine for this procedure, so I don't know if this adds another specialist or is headed up by the GI doctors.  
4.  Also on Friday they will be putting a tube down his other nostril and doing a test on his stomach acids.
5.  We are still awaiting the results of the genetic/chromosomal tests . . . . 

We are fortunate that Ethan remains in good spirits when he is awake, and that his brain, heart, and vital organs (including hopefully lungs tomorrow!) have checked out o.k. and remain in good condition.  Robin continues to be by his side almost every moment, and I get over when I get a chance.  Thank you to those who have helped with our other boys -- it's helped me have some time in the mornings and evenings to get over and visit with both of them.

Ethan has been in the Children's Hospital so long now that he has met Disney characters, professional wrestlers, Arizona Cardinal players, and more.  Many stop by to say hi to the little ones, and it's great to see how many people and organizations care.  I remain amazed at the outpouring of love and support from all of you and so many more.

Thank you for walking on this journey with us, and I hope that I'm not too verbose in my updates . . . .

God Bless, 


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