Sunshine Sadie Mae

Sunday, May 9, 2010

Pray for Sadie Mae

Sadie is having tubes put in her ears May 13, next Thursday at Primary Children's,
and I'm awaiting scheduling at Primary's to call me with a date for open heart surgery
that needs to be done in the next 2-3 months due to a newly developed condition,
in addition to her pulmonary hypertension and leak. I don't have a surgery time for Thursday yet, so I don't know if I"ll head to SLC Wednesday or not, but they will keep her overnight due to her heart.

The reasoning for doing the ear tubes first is that she has had so many infections since her others fell out in December that she is immune to nearly all antibiotics, and still has a hole in the left ear, the smallest one, so if we did heart surgery
right away it would be labeled a "dirty surgery" and antibiotics they load her with wouldn't do any good to ward off endocarditis or other life threatening infections from surgery.

On her routine yearly followup ECG they found a subaortic membrane with a pressure of
over 60, with high normal being 20. This has never been seen before on any of her studies and is congenital and can and may have damaged her valve, which we won't know until she is in surgery. There is the possibility this will regrow and will need removed with more open heart surgery in the future. He took her off her bp medicine for her pulmonary hypertensionfor now as it isn't doing any good because of this other problem...

What the cardiologist told me is very concerning is that this has never been seen before, that it showed up suddenly and large, and she is at risk for heart attack, etc., You can actually see and feel the thrill in her throat where the pressure of the blood is pushing through this aorta. He then asks me if I'm going to be alright.
Well I thought I was until he asked me.

Both this problem and her pulmonary hypertension affect her pulmonary function as well.

You'd never know her heart was in such fragile condition as she runs nonstop and is
into everything as of late. She is saying more and more words, carries her stool around with her to do "dishes" for me and clear cupboards. I can't believe she is turning 4this month. She is still very much a 2-year-old.

Life is so fragile. Please handle it with prayer. Please remember our Sadie Mae in your prayers.I'm far from ready for her mission to be over here on Earth. I've always feared that God would take her back home once I got my life in order and Temple ready again, and now that fear could very much be a reality.

Life was looking so promising for a short while there and I finally got us a home, and now not only Sadie's health, but the one person, next to God, I need right now, has turned his back on me.

I'll get through this. I'm strong... (like that makes it all better... it's not..) Being strong does NOT mean you don't need someone to hold your hand.

1 comment:

Danny + Alene said...

Hang in there, Julie. We'll keep Sadie, and you, in our prayers. ~Hugs