Friday, June 9, 2017

Post op day 18

Abby was still fairly rotten today, but I let Matt handle must of that!  Tag, you're it! πŸ˜‰. They kept her Valium levels the same today, since she had such a bad day yesterday. We all played in the play room quite a bit and also went on a walk/ride to the rooftop garden again.  It was a beautiful day!

 
  

We found another garden as we were looking down from the rooftop garden.  There were some really cool water sculptures there!


 

My pretty girl loved all of the flowers!

 

We were a bit frustrated with the pulmonologist here, who just barely made an attempt to contact our Hopkins pulm yesterday...it was a feeble attempt at best!  I got her a different, more direct number this morning, and she still hasn't called at 4:30!!!!  Knowing that it was Friday afternoon and CHOP was planning a discharge of Monday, we really wanted the two to talk.  She finally called Hopkins and they were able to talk.

Because our pulmonologist at Hopkins knows her so well, she is really concerned that Abby is relying on bipap during the day.  There's a huge difference between using bipap at night to conserve energy and help you have enough for the day, and absolutely having to use it to keep your carbon dioxide levels down and be able to breathe properly.  This is where Abby is right now, and her instability is concerning and worrisome to her and us!

I'm really glad she spoke up about this and took control of everything.  We all feel that either they need to successfully wean her or find a definite cause for this sudden decline.

So, until one of those two things happens, Abby will stay here in the hospital.  We really aren't sure how long that will be, but we will follow her cues.  

We are making the best of it and lining up some visitors for the next week!  If you would like to send a card to Abby, I know it would brighten her day!  Her address is:

Abigail Leach
8 South Room 18
The Children's Hospital of Philadelphia
3401 Civic Center Blvd
Philadelphia, PA 19104

You can also send an e-card by going online to the CHOP website.  The hospital will print them out and deliver them to her.  This is the link:  http://www.chop.edu/patients-and-visitors/contact-patient

Thank you all for your support!

 

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