Top of the Class

Yesterday was our usual clinic appointment at Primary Children's Medical Center. 

We were told we didn't need to do blood labs this time since it had only been a week since Dru's last draw. 

My little man B, came with us again. He calls it the Long Doctor because it takes about an hour and a half to get there. I am grateful we are that close to one of the best children's hospitals in the country :)

Dru has gained weight. But not the good kind. She's collecting fluid again in her belly. We have maxed out her diuretics, and if there is not a significant change by Friday we will talk about doing another tap. 

It also seems like she is taking in less and less formula even with the NG tube. Too much and she throws up. 

We are getting closer to IV feeds I think.  It has it's pros and cons.

 An IV means more risk of infection. And if she has an infection they can't perform a transplant. It also makes it easier to collect fluid in her belly. 

On the other hand, the risk of infection can give us exception points to add to her PELD score. And she pulls her NG tube out nearly everyday so I'd love to be done with that, although the tube makes medicine time quick and easy. 

This is a decision we are not taking lightly. Right now our doctor supports whatever we decide. Eventually, I think the TPN is inevitable. 

2 very positive things came from yesterday's appointment though. 

Her face is really itchy from the bile in her blood so we got to try Benadryl last night, one of the side effects was that Dru slept so much better. She was only up 2-3 times, instead of 7 or 8. 

And we were told, that even with a 19, Dru is at the top of the transplant list for babies in our region with her blood type. 

Dr. Jensen also wanted us to go ahead and do labs anyways. Her 19 jumped back up to 24!!!!

Overall, we left the hospital feeling more hopeful than we have since the false alarm. 

I think I'm catching a very faint glimmer at the end of the tunnel. 

PS--Dru loves watching trey play football