Finally...They told me something

I stayed over again last night with Ellie.  Ellie had a great day yesterday.  Her levels were good.  They were able to position her several different ways (one thing we might not have told you, Ellie is very sensitive to the position shes in, if she doesn't like how shes laying, her levels can go down fast).  She was awake and moving a little a lot more yesterday.  Yesterday afternoon, she changed her tune on us.  While Matt and I were doing her trach care for the first time by ourselves Ellie's heart rate dropped.  We aren't quite sure what happened.  It took her a few seconds to come back up to her normal range.  This terrified Matt and I.  We were about as calm as we could be.  We didn't want her to know we were upset and get her even more upset.  Then, her heart rate went up, way up for her.  We had the nurse give her a extra dose of medicine and normally that calms her down.  Not this time.  It took Ellie a good hour to settle down.  We think what actually did it, was the respiratory therapist came in and repositioned her vent tubes.  Once she did that, all of her levels came back up.  I never want to see that happen again.

Today in rounds, they discussed doing a heart cath on Ellie.  This was something new to me.  After the doctors left, the nurses and nurse practitioners stuck around to talk to me.  They said pulmonary hypertension specialist that came to look at Ellie wanted to do this before he consulted again with Dr. Manning.  Since I had not heard of this before, the charge nurse suggested that someone needed to come talk to me to give me some answers of what they were thinking of doing.  About an hour later, a cardiologist came to talk to me and have a look at Ellie.  She explained that the pulmonary hypertension specialist also agreed that Ellie could benefit from the chest expander.  However he wanted to do a heart cath prior to doing this so he get a clearer look at what her vessels looked like.  This was the same cardiologist that was pretty blunt with me last week.  Today she had a different attitude.  How amazing another doctors opinion can change an attitude of another doctor. 

As you guys can probably now tell, this is how our life is right now.  We get good news, then we get bad news, good news, bad news.  It's hard, I won't lie.  But when I get the good news, I take it.  It continues to fill me with hope.  And as a lot of people say, to look at Ellie, you wouldn't know she was very very sick.  That to me is amazing in itself. 

Please please pray for these results to be good.  I know God works in mysterious ways and right now I believe he is doing that through this new doctor.  I hope this doctor could be another answer to prayer.

Thank you all again for all of your prayers.  Little Ellie sure is one lucky little lady!

Love,
Ellie's Mommy