More swimmin

Hi friends, first I'll update on Jax. His ped talked to neurosurgery and his ENT about treating the symptoms were having from the SVC blockage. Of course, still no word from Boston, so we need to be ready if they say no, because his symptoms are getting worse. His airway issues he's having we think are from all the fluid in his lower face putting more pressure on his airway. He still can't have his tonsils and adnoids out because of the bloodthinner issue, so we may be going to c-pap at night. Yah (sense the sarcasm?)

And the only way to treat pressure in the brain is by putting a shunt in. Nope, no way, not going to do it. To me it seems more logical to fix the SVC than all this crap. She still thinks the SVC surgery is going to be to risky. I say let me decide that if Boston ever calls. The shunt would be a huge surgery, infection risk, not to mention another foreign body in his head that he can clot on. So we have lots of appointments coming up. Cardiology, pulmonology, vision. Whew.

Here's some pics from Tuesday night. My sisters went home yesterday. Ugh, I miss my nieces already.

My nieces checking out Sadie's birthday cake. Sadie is the older one.

Evie giving me her evil eye.

Thanks for all your sweet comments on my last post. I was so upset about this baby dying. Here's a couple of blankie kids. Of course I don't have them up on the blankie blog yet. I'm a little slow this week.