18th Week - Personality to Spare

Hello and welcome back!

Breathing

This week was Alexandra's best week ever in terms of breathing.  At the beginning of the week, she was still off of CPAP and using something called a high-flow nasal cannula,  By mid-week, she was on a regular cannula, and by Friday, she was on something called Pedi Flow, which is another nasal cannula that delivers very small volumes of pure oxygen.  In plain English, she's now getting pure oxygen just trickling out of a tube that's resting at the entrance to her nostrils.  This is a form of breathing support she could actually go home with (if she still needs it when that long dreamed of day finally arrives).

Feeding

For the first time in a long time, breathing is not her primary concern.  Now we have to get her feeding.  She still doesn't want anything in her mouth, but Suhey has been working with a Speech Therapist to do some exercises that will hopefully de-sensitize her.  After another 1 or 2 weeks of this, we'll try to do another "swallow study" to see if she is properly coordinating the movement of fluids from the mouth to the stomach.  In the meantime, she's still getting her food through a feeding tube (through the nose, down into the stomach).

She was vomiting and refluxing quite a bit, so at the beginning of the week, a gastroenterologist was brought on board.  He concurs with us, the attending, and the pulmonologist that there are still more things to be tried before the big surgery is considered. We started her on an antibiotic (erythromycin), because it is known to propel things in the GI track in the right direction (the opposite of puking).  It's a pure accidental affect; it has nothing to do with the antibiotic affect and she does not have an infection.  Since it started, she seems to be doing better... less puking (less laundry), and her heart rate is lower again.

Personality

It seems her personality is coming out more and more.  Most of you know she's smiling now, but she's also doing some other interesting traits. When her Occupational Therapist comes, Alexandra knows she's gonna have some unpleasant moments (as we stretch out her neck muscles to compensate for how much she favors looking to one side).  To try to avoid this, Alexandra has - on more than one occasion - played opossum.  Also, some of the RN's have noticed that if she's in the room by herself she can be just fine... but the second she realizes someone is there, she'll start to cry.  Who can blame her on that one?

Smiling big for a head massage, thanks Dad!

Snoozing with Grand Ma

Abuelo's first time holding!!!