Answers...

1How long, O Lord? Will You forget me forever? How long will You hide Your face from me?2How long shall I take counsel in my soul, Having sorrow in my heart daily? How long will my enemy be exalted over me?3Consider and hear me, O Lord my God; Enlighten my eyes, Lest I sleep the sleep of death;4Lest my enemy say, "I have prevailed against him"; Lest those who trouble me rejoice when I am moved.5But I have trusted in Your mercy; My heart shall rejoice in Your salvation.6I will sing to the Lord, Because He has dealt bountifully with me.Psalms 13
Today seemed to just, keep, dragging, on and on.  It is simply exhausting going to the doctor's office.  Zachary had a cardio appt this morning at 8:30.  Zachary and I arrive, check in, and fill out the SAME three page health history paperwork we filled out 3 weeks ago (just in case something changed or you accidently omitted something previously.)  Then we wait to be called back.  We wait and we wait.  Right when I am about to doze off, the front desk assistant calls Zachary's name and we head back.
They take his weight, height, head size, and vitals.  Yep, everything is the same as it was last time. By this time, 10am, Zachary had been wiggling and kicking his legs so much it loosened his ostomy bag which then needed changed.  So I proceed to change it.  Of course the doctor walks in as soon as I have taken the old one off.  So I complete the ostomy bag process and we proceed to discuss the plan of action for Zachary.
I explain what happened this weekend.  Zachary was doing great with his feeds, but then all of a sudden is no longer tolerating his feeds. So we came to the conclusion today that we need to convert his feeding tube to the one the bypasses his stomach since it appears that his stomach is mostly the problem.  In doing this he should be able to pack on the calories and grow, which is what cardiology wants him to do. 
They do not feel like doing his heart surgery right now (which could benefit him since he isn't tolerating his feeds) because he needs to be in the "best" condition he can be for the surgery.  The doctor said his heart is technically functioning ok because he hasn't out grown the PA band they placed.  So we keep waiting.
Zachary is such a unique case they are all nervous and unsure what is best for him.  The doctor said this surgery normally is a pretty easy procedure in kids with just the heart issue, but for Zachary, he just has SO much other stuff going on, it is hard to do a big surgery like that when so much other stuff plays into it.  So for now we wait and try to grow some more.  We go back to cardiology in 4 weeks or sooner if need be, but for now 4 weeks.
Our next steps are to get the new feeding tube placed and pray he grows.  We see Dr. Egan Wednesday and we might be able to get the GJ placed then as well.  Thank you for your continued prayers.

We are finding out that definitive answers are things that we just cannot get from God or the doctors.  We are seeing the next hurdle approaching and have tried to get the doctors to nail down a window but they have so far refused.  We have been praying for the surgery date to be known to us so we can prepare.  Again, no answers.

As the Psalmist wrote in the passage above, we are trusting in His mercy and we will rejoice in His salvation!

God is Good!