Friday, December 4, 2009

Greetings from the Yale PICU

So hey! We're back at Yale! Yale, sweet Yale. How we've missed you.

Lydia's oxygen saturations have been lower the past couple of days, but last night she was only holding her oxygen in the mid-eighties and has been doing that all day. I took a very amateur listen to her lungs and (like any good mother) thought I heard something (even though I probably made it up) and we decided to go to the doctor.

Dr. S. took a listen and sent us for a chest x-ray, thinking she might have a touch of pneumonia, which is a definite possibility in someone like Lydia. We went and they did the x-ray, but didn't tell us what was happening (never a good sign) and sent us back to the pediatrician.

When we got back, Dr. S. told us that Lydia has pulmonary edema, which is the build up of fluid in her lungs. She recommended that if we wanted to take any action, the best thing to do would be to take her to the hospital so they could get a larger dose of Lasix into her system via IV.

Off to Yale we went. We spent a little over four hours in the ER. It's fun trying to explain to many medical professionals who have never heard of Zellweger Syndrome what is wrong with her. They come in and ask, "What's wrong with Miss Lydia?" and we chuckle. Finally a cardiologist came to see her and did an ultrasound of her heart. Despite the fact that the hole in her heart is smaller than it was, it's still big enough that it is letting a lot of fluid get into her lungs.

So, after multiple promises of being brought to the PICU and multiple delays because of other patients needing more attention than us, we're finally up here and settled. Lydia is sleeping nicely and soon we will be too...yeah. Right. They told us that the Lasix should work pretty quickly and that it's not out of the realm of possibility for us to be out of here by tomorrow if everything goes OK. The doctor was confident we wouldn't be here past Sunday.

Please pray that the fluid in Lydia's lungs dissipates, that her oxygen levels will stay high and that we'll be able to go home soon. When there's more to tell, I'll tell it.


  1. sending your sweet lydia prayers for healing, and to you both, prayers for strength

  2. My thought and prayers are with you all. Praying with confidence in our Lord for Lydia.

    Our Emma had a hole in her heart that was repaired last Dec. I know the fears to some degree. :) You are an amazing testimony so don't ever forget that!!