Thursday, November 14, 2013

Long rough day

oh goodness what a long day I have had....

To start our day Ellie saw her GI dr (good visit) and we talked about her meds, discovered while she has grown and is now 49 1/2" she has dropped from 23.7kg down to 22.5kg... meaning she has dropped from just over 52lbs down to 49 1/2lbs (sigh)

We are getting her scheduled for a button change (again in IR and under anesthesia) and talked about the major GI surgery to separate her gj-tube into twp stomas. She is against this especially at this time as she has so many issues already and the complications with this surgery are to high for her. The biggest complication is shutting down her entire GI system and it not starting back up again. (her biggest fear with Ellie). Not to mention the GI anomalies and other issues we are dealing, she feels this will place way to much stress on her GI system.

We are going to try increasing the rate of her formula further to increase her calorie count and HOPE this helps and keeps her growing.

Ellie was very brave for her blood work today and did very well despite her fear of needles. This was the first time she did not fight with total thrashing and kicking. Instead she sat crying and almost screaming but they got her blood. Only one was needed to hold her arm, one to draw the blood, and today she got to sit in daddy's lap with a daddy hug to help her sit as still as possible.

My GI appt today did not happen. I had rearranged physical therapy for our 14 yr so I could make it in time, yet did not  I left at about 3pm to arrive in time for the 4:30 appt. I figured with a 45-50 NORMAL drive if I planned 1 1/2 hours I would at least arrive close enough. Not even so... I took e 2 hours and 15 minutes just to arrive. I went anyway hoping to reschedule, but was given a number to call and told my dr has no openings for quite some time and especially because I totally missed it I have to wait now (grrrr) the receptionist would not even let me talk to the nurse while there and just told me to call back.

So I called the number to try and reschedule and the nurse will not even be in tomorrow, so I have to wait until Monday now 

I am just glad I saw the car that decided to cross the road in front of (without warning) before I t-boned it. I think I missed that car by only 3-4 feet. Not a distance you want to miss a fancy sports car with a GMC Yukon.