Tuesday, October 21, 2008
Wishing there was better news.
Its been a very frustrating weekend with conflicting doctors reports. Cardiologists in Columbia and Charleston along with Pulmonologist and her Pediatrician are all collaborating about the best way to proceed. The nutshell version of the story is this:
-She has fluid building up on her lungs again and is being treated with lasix, steroids, nite-time oxygen, nebulizer breathing treatments, inhaler treatments, and antibiotics along with her other “normal” drugs.
-It is likely that in the next week, we will have to take her back to MUSC for
1)a sedated echocardiogram and
2)possible heart catheterization
Possible causes for her chronic pulmonary struggle that doctors have suggested are:
1)Pulmonary Hypertension (treatable but progressive and not cure-able)
2)Narrowing of Pulmonary Artery (a common side-effect of her surgery. The artery is compressing when she sleeps causing desaturations…would probably require another open heart surgery)
Needless to say, the possibilities are overwhelming and scary! Its been nine months, dozens of doctors appointments, enough drugs to stock a new CVS, several hospitalizations and we still don’t know what’s causing her edema and hypoxia.
Please pray specifically:
-That Evie would heal and get strong enough that we can safely proceed with further testing and evaluations
-Wisdom and unity among her doctors about how to treat her and what the plan of attack should be
-The kids and I. C is out of town a bit this week. The new meds regime takes about 30 minutes 3 times a day. I feel like Im doing a poor job keeping them on track with school and giving them the attention they need.
But His grace is sufficient! Thank you praying friends for again seeking the Lords direction with us for our precious girl!
On a lighter note, she learned Patty-Cake this weekend and is so proud of her new mastered skill! Too cute!!