It just keeps building

Posted: November 4, 2013 in Uncategorized

So this Friday, at the urging of the pulmonologist, I took L in to the ER because of her cold.

We were admitted to the pulmonary ward within a couple hours.

So we got to spend the night in the same hospital that G died in. Effin’ awesome! /sigh

They are now treating her as though she has asthma on top of everything else. When we were released it was with 2 more daily meds (a steroid and another asthma medication). 

She has a right heart cath and bronchoscopy on December 18th. That procedure can be risky in kids with PH.

One thing after another. It just. keeps. coming. 

The tears have started up again. I’m dreading the holidays. Bad enough that we should have been celebrating with an infant in the house, now all we’ll have during the holidays is her ashes, but on top of that, not knowing what all is going on with L.

She takes Tracleer, Lasix, Miralax, Albuterol, Atrovent, and Flovent every day now. That is a crapload for a kid to be on.

She also is on 1 litre of oxygen with exercise, and currently using it at night because of this cold.

Everythings spinning so hard I can’t see any good any more.


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