Medical mystery...Days 10-12

Day #10 (Sunday)

Today we were able to accomplish getting Audra to full strength continuous g-tube feeds...and she successfully held it all down!

Because of the reappearance of some challenging behaviors and body movements yesterday, today they added a second daytime dose of clonidine to cover her into the evening. 

She seemed extra tired today and took two decent naps...2 hours in the morning and over an hour in the afternoon.

By late evening they were able to wean her off the IV nutrition.

But the most exciting update of the day for Audra was that they took her off isolation precautions so she could finally leave her room for fun!!  We went on lots of walks {well, rides for her in a little push car} but the rest of us got plenty of steps in !  She was also able to visit the playroom where she played with the toy kitchen and had a quick attempt at painting.  Messy but fun!

Day #11 (Monday)

Audra's tummy troubles seeming to be heading in the right direction so today we got to work on a better plan for her behavior concerns.  She has still been receiving her night time dose of clonidine for sleep, and since we have been here they have added a small 8am dose and another small 1pm dose to help with her behavior.  But then she developed the new issue of  spikes in her blood pressure that they think are a rebound effect each time a dose of clonidine wears off.  So the new plan is to switch her to an extended release dose of clonidine at bedtime that will cover her for 24 hours and hopefully not result in the blood pressure spikes.  But...the hospital doesn't carry this drug so the doctor had to order it as an outpatient med that I will pick up at the CVS downstairs.  When I went down to pick it up, it turns out CVS needed to special order it, so I will arrive tomorrow afternoon. 

The biggest news of today was that Audra was allowed to EAT by mouth!  Sweet girl hasn't had a taste of anything in 9 days!  Her face lit up at the sight of food in front of her...

Day #12 (Tuesday)

Today's goal was to get Audra back on her home g-tube feeding schedule of two daytime bolus feeds an then 12 hours continuous overnight....which would make us one step closer to HOME!

Audra's very lovely GI doctor stopped by to visit...turns out she has been away this whole time.  I told her she missed a whammy of a week with Audra!  But she had been kept in the loop by the GI doctor who saw Audra last week.  She was very interested in the new genetic diagnosis of ZTTK syndrome that Audra received last week and she has already been doing her own research. She found it quite interesting that some of the other ZTTK kids have pancreatic insufficiency...something Audra has seemed to have for years without an explanation as to why.  She has plans for future scoping with specific enzyme testing to more fully evaluate her insufficiency which will help us determine if med and/or formula changes are needed.  But all that can be done after she has been discharged from this hospitalization. 

With Audra moving in the right direction and no big plans for her medically today I decided to head upstairs and get a few hours of work in.  It was nice to get away for a while and see the world outside of the four walls of her hospital room.  But those 6 hours were the longest I have been away from her in the past 12 days!  I couldn't wait to get back and see her.  Turns out she was pretty sleepy the whole time I was gone.  Lucky me...I guess she wanted to save up all her energy to share with me.

The new medication they ordered came in and I was able to pick it up from the CVS in time for her to receive her first dose tonight...fingers crossed that it helps with her behavior and blood pressure.

4 years ago today...April 4, 2013

 We boarded a plane {or two} bound for China and our sweet little treasure, Audra.

Little did we know the wild journey we would continue to take with her these past 4 years since welcoming her into our arms and hearts!