I wanted to post a quick update so people won’t worry, but there’s not much new to report.  Today was another great day for Annabelle!  She’s still tolerating her feeds well through the NJ tube, and the doctors are slowly increasing her rate by 5ml/hour every six hours.  This nutrition is really helping her metabolism, and this morning her lactate was 3.6 and her ammonia was 58 (they are only checking these labs every day now instead of every six hours so we’ll have new results in the morning).  Hopefully by tomorrow she’ll be on the continuous feed rate of 35ml/hour and then they should get to the point where they can take her off her TPN (IV nutrition).  If they can remove her IV nutrition then she won’t have any long tubes coming out of her central line in her neck which will be great!  She also has two JP drains on the side of her abdomen that are draining excess fluid internally from the surgical site. They are still draining more fluid than the doctors want so those will likely stay in several more days.  

Annabelle had a fun day of playing with her toys, getting a good bath, and working hard for the occupational and physical therapists.  Lots and lots of smiles were given out to everyone she met!  Unforunately, she was napping when the dog came by so we hate she missed her dog therapy session. She’s sitting up for minutes on end, and she is really gaining lots of strength.   Her incision is also looking really good!  Everyone is super impressed by how well she looks!

From our perspective, we love being in 7B!  It’s quiet, calming, restful, spacious and the nurses have been very nice and great at treating transplant kids since this wing’s main purpose is transplant recovery (PICU treated everything).  We have our own private full bathroom, and the doctors/nurses don’t come in to bug Annabelle nearly as much as they had to in the PICU.  The amount of doctors overseeing her care is also much smaller (only the transplant and genetics teams oversee her care now).  And there are less meds, less IV pumps running (we’re down to 2!), and less labs drawn daily.  Overall, we are so pleased and thankful for the progress Annabelle is making and we’re hoping things continue to go well (although we know there will probably be bumps in the future).

We really appreciate all of your prayers and support, and we LOVE that we’re starting to get cards in the mail! 

Prayer Requests:

1.) Continued prayer for the donor’s family.

2.) Continued prayer for no infections, no rejection, and no clotting.

3.) Continued prayer that Annabelle’s abdomen heals well so feeds could resume in her g-tube (we want to take that NJ tube out soon). 

4.) Pray that her internal fluids would drain quickly so that the doctors can remove her JP drains.

5.) Continued prayer for lactate below 2.0 and ammonia below 30.

6.) PRAY FOR EXCEPTIONAL NURSES.