Hi everyone!

It has been an eventful but relatively peaceful few days.

On Thurs, Jen and I arrived at the hospital to find that Maddie was scheduled to be transferred to their recovery rooms (heart and kidney unit).  It was a bit early, but the surgeon felt that it would be safe and most importantly, the CICU needed her room for more serious patients.  The recovery room is much quieter and larger but by definition less “intensive” so we have to call the nurses whenever she needs something or a minor alarm goes off.

On Friday, the doctors wanted to observe Maddie‘s chylous effusion to see if she would be ready for feeds by Monday.  Maddie was tolerating the move and Jen was becoming more hands on with her care since there were less tubes and lines.

Saturday was very eventful as my dad and Jen’s mother and sister were able to come to the hospital for a visit in the step down unit.  Maddie was very calm and seemed to recognize them (instead of her usual crying when a stranger/nurse came in) and even smiled when grandma teased her!  She then pulled her feeding tube out by herself again and the doctors decided to let her take medicine by mouth, which was a great sign.

I drove into DC with Jen this morning and we spent the next few hours bathing, changing, and playing with Maddie.  She’s much more calm, less irritable, and seems to be in a much better mood.  However, her lymphatic system was still not healing as fast and even causing her blood oxygenation levels to drop into the low 90’s.  The doctors are adjusting her medications and giving her more time to heal, which seemed to be helping.  Jen reports that her blood ox levels have been steadily climbing since the afternoon.

Here are a few pictures from today:

The doctors won’t let her eat anything by mouth, so she resorts to licking the little bottles of sterile water and then giving us a sad face. She seems to be saying: “Come on guys, give me some real food!”