Sunday, December 17, 2006

Feeling blue - the third echo & fever

We can't seem to escape the shadow of the Norwood procedure - the most dangerous and radical surgery proposed to treat Wren's condition. Tonight Wren was transferred to Children's Hospital and underwent another battery of tests:

An echocardiogram
A chest x-ray
Blood gases (stabbing and squeezing his little foot repeatedly to draw a thin tube of blood which then coagulates too quickly to process while he shrieks and turns red)
Pulses
etc

After viewing the echo the cardiologist said they would need to consider treatment for the stenotic aortic valve because "it will not develop properly" and "some kind of repair is going to be needed sooner or later" AND resolve the coarc and hypoplasia proximal to the PDA entry.

Then he mentioned "if they decide the Norwood is the best approach we will need to open the ASD (atrial septal defect) because its a bit small. ARGH. I really don't understand how they get from a sufficient left ventricle to the Norwood in one foul swoop.

I am now terrified that our little guy will need this Norwood - Fontan surgery and that this hospital is not the best place for it. I am terrified we will lose him and already I cannot imagine life without him in our family. He is the most gorgeous little soft-haired bundle who LOVES to suck on anything he can find and would just be the perfect little baby to have at home but for the cardiac condition. His fingers love to grasp on mine and he calms down if you say "shhhhh shhhhh" near his ear. He loves being swaddled and rocked by us and I'd like to hang out with him all day. I am considering taking up knitting so I can just spend time there with him doing nothing much else.

Now, in a stroke of bad luck I have developed a fever this evening which may be something to do with milk coming in or may be mastitis, bladder - who knows. Regardless, this means I cannot see Wren-ben until its resolved and I miss him awfully. My OB suggested I come in to the ER until they can see me if it is not gone by tomorrow. I do not know what the NICU protocol is for things like this. I suspect it will be at least 24 hours after the fever goes.

Can you tell I am feeling miserable?

No comments: