Tuesday, September 24, 2013

The results are in!

And if the length of time it took to report back to us didn't give it away (I've learned, the worse the scenario the faster the call), this face will surely tell.

Loving her "reward" shades!

The CT reported absolutely no narrowing at the connections in the vessels and no blood flow issues!  Happy faces and thumbs up all around at this piece of news as it means that no surgical intervention is necessary! Phew!!!!

Of course, the harder you look, the more you will find. The CT reported "a noticeable prominence of her small bowel"  Huh?  It was explained that a portion of her small bowel is slightly enlarged or swollen....
What exactly does that mean? Maybe nothing--probably swollen from the trauma of the surgery; maybe it was like that all along, maybe it wasn't.  Maybe it will be like that from now on....Who knows?  But the doctors do not seem so concerned and to be honest, I am not that much either.....It will continue to be monitored at our regular ultrasound appointments.

We did have a slight scare at yesterday's appointment which resulted in repeat blood work.  Of course the specific blood test they were monitoring (PT-INR) could not be taken from the PICC, so she had to have 2 separate peripheral draws making her a not so happy camper momentarily. Not sure how we are going to go back to draws once our PICC is removed (which I hear might be in the not so distant future!). Alexa got through the second draw, and I got through the waiting for the results and her level came back at a perfect 1.1.  I took a huge sigh of relief as the first level reported was super high--immediate intervention kind of high! Glad we did not have to go down that route! I am sure the lab just wanted to see how quick I could grow some extra grey strands! Turns out--pretty damn quick!

We have her prograf level exactly where we want it right now! And in 1 week, we eliminate 3 medications!!! Her daily IV infusion of gancyclovir will be done in about 3 weeks time and we only have 2 more of those 4 hour cytogam infusions that we get done at the hospital! I can see our 3 month post-transplant up upon the horizon!

And if it were not for those pesky LFT's, I would be doing a happy dance right now! Her LFT's are being closely monitored (more so than usual), they are not concerned YET, however they are (and I quote) being "mindful" of them.  They have been increasing slightly over the last 3 weeks.  Not huge, only about 5 - 10 points, but increasing 5 points at each visit for 3 weeks in a row is definitely not the trend they want to be going in.  She has had a runny nose and that could very well explain the increase but still not happy.  We definitely want to start heading in the other direction.

And this seems like a great time to remind everyone of The Great Camp Adventure Walk that we are doing on Saturday to give back a little to the hospital that has given us so much!  I am soooo close to my personal goal.  Thank you from the bottom of my heart to all those who helped make this happen!

If you would like to donate please click on the link below:
http://www.support.sickkidsfoundation.com/site/TR/Events/CAMP_13?px=1255435&pg=personal&fr_id=1040

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