A year ago

Yesterday marked one year ago that Samantha went into respiratory failure.  I can't imagine that we almost lost her. The events of that day will always be cemented in my memory.  Our family surrounding us while our little girl was being saved by the team at CHOP.  To call it a surreal moment is definitely an understatement.

This past year has been a roller coaster of emotions, hospital stays, ER visits, nursing schedules and lots of new equipment to adjust to.  Val and I went from thinking we may lose her within a week, to watching her get back to herself and then some, to thinking we would be able to remove the trach, to realizing that at least for now, the trach has to stay.

And by the trach/vent staying, that means that we keep the equipment, the extra bags, the nursing care. The crazy that is our daily lives.

Val and I are always trying to adjust to whatever has been thrown at us....all the while making sure that Samantha has the best time she possibly can.  If her disposition is any indication, she seems to be having a ball.  Despite her health issues and various accessories, we have been rewarded with one of the most loving, smiling, sweetest little girls.  As usual, I have no idea what the future will hold.  But, I suppose that is true for all of us.

Until next time,

Monica

Just a brief update....

Samantha continues to get better following her bout with RSV a few weeks ago. Sammy is still on her vent at night and also getting her overnight tube feeds.  We feel the combination seems to have brought back some of her spunk that she was missing a month or so ago.  She is toddling more and seems to have more energy than she had about a month ago.

While Val and I are upset that we won't be removing the trach anytime soon, we are very happy that adding back in those two things seems to be helping again. And of course, Samantha continues to take EPI-743 which we feel is doing wonders for her.

Until next time,

Monica