Spinning

Today was not really a good day, it wasn't bad, just not good.

My mind is spinning - I go from alright, to not so good, to down right depressed - I'm feeling so very manic right now. I wish the world would stop just for 5 minutes to let me breathe a little bit.

I had changed Zach's appointment with the GI ARNP from the end of this month until this afternoon. My hope was that the Dr would be there and she would have him come in, this way we would see him before seeing the surgeon on Monday. That was wishful thinking as Zach's GI is out of town this week.

Zachary got weighed when the MA brought him back - too bad she wasn't consistent like she should have been - the scale showed him a whole 2 1/2 lbs larger then he is. The ARNP took him and did it the right way -- Zach has lost weight since our last appointment there 3 months ago - 1 1/2 lbs lost to be exact.

Zach's medicine is causing side effects so we are to take it down from 4 doses to one just at night to see if the side effects go away. If they don't we are to stop the drug ASAP.

We had a long talk about the feeding tube and from the sounds of it Zach may end up in the hospital for about a month. She said in a perfect world they would start with a ng-tube (http://en.wikipedia.org/wiki/Nasogastric_intubation ) for a week to two weeks to see if he tolerates tube feedings - if he does then at that point he would have his g-tube placed, but because of his age she said the surgeon may just go straight for the surgery. I'm not sure how I feel - I want to help him, but if it could be something he won't tolerate I'd hate to put him threw the surgery - at the same time it is something that can be taken out if it isn't working for him. She also said when this all happens she would like to see him being fed by the tube during the night with 1-2 feeding during the day and supplements by mouth during the day as well.

OF course we won't know what is happening for sure until next Monday when we meet with the pediatric surgeon - he is the one who makes the final decision. After that appointment we are to head straight to the GI's office for an impromptu appointment with him, the ARNP, and Zach's dietitian.

I think my mood swings are plain and simple - they are happening because we are so unsure of what is going on. Pretty sure he is having the tube, but which one?!?!? As it seems there is no other way to help him grow, but unsure of when it will happen - in a week in a month?!?!?!?

I'm longing for the day where my head stops spinning!