Exceptional

So I think I have fallen a little behind on medical updates for Dru. 

So much happens in a week!! 

So I'll try and catch up. 

Dru is tolerating the TPN really well. It's more a hassle for me to keep everything on schedule. We struggle with that around here because our son is very busy with sports and none of us like to miss anything. 

We are learning to plan ahead or that it's going to come down to one of us staying home with Dru. 

So we had been home from the hospital with a smaller belly and new picc line for a couple days before her belly really starting looking large and tight again. 

Dru is on 2 diuretics but by Wednesday she stopped having wet diapers. I was in touch with our liver team off and on all day coming up with a game plan. 

Finally we were told to go to instacare for blood labs and a bladder scan. Our instacare is not set up for ultrasound so off to the ER we go. 

Dru and I went by ourselves because I really didn't want my boys at the hospital til midnight so Bill stayed home with them.  

All the way there I kept going over "what-ifs" in my mind and was working myself up pretty good. I walked in to the ER and was so relieved that I knew the nurse from high school, I nearly cried. 

The instacare had called ahead so I didn't even have to wait. They started Dru's vitals and she cried so hard she peed!!! Boy, how I wish she had done that an hour earlier. 

We still went ahead with the ultrasound and blood draw. I'm thankful to the on-call GI doc at primary's who let the ER people know exactly what was needed. 

Needless to say it was a loooong night for Dru and I. 

Friday of that same week we were scheduled for our usual clinic visit, but because of the size of Dru's belly we just went right to ultrasound to get her belly drained again. 

8 days earlier they were able to get 600 mLs off her belly. 

This time they took 820mLs!!!!!!

She was feeling so much better afterward. It's been a long, long time since I've seen her in such a good mood. 

While she was sedated, they did a Doppler of her liver and found that her liver is collecting fluid. This can be typical of BA, but the fluid puts her at high risk for developing an infection. We were told that if she has a fever at all to start driving to primary's and get on the phone to the liver clinic on the way. 

I'm feeling her forehead constantly. 

There is a silver lining here though. Our awesome doctor, Dr. Jensen, applied Dru for exception points. 

We just heard this morning that she is approved for a PELD score of 30!!!!! Even if her natural score is lower, she gets to keep her 30 until December 10. 

This is great news. It hopefully means there is a light at the end of the tunnel.