Thursday, March 1, 2012

Another small hill to climb!

So got some not so happy news today.  All week I've been watching that incision site like a hawk and kept saying I didn't like the way it looked. I even mentioned it a couple of times in the NICU. Everyone including our pedi told us it looked ok but both Eddie and I just didn't feel right about it, it looked so swollen. So I impatiently waited for today's head ultrasound and neuro appointment. Our regular neuro was off this week so we met with another neuro at the practice. Apparently his ventricles in his brain have become more enlarged since last week. Also he agreed that his back incision shouldn't be that swollen and it's from the fluid draining down. His recommendation was to set up surgery to have a shunt placed in his brain that will drain spinal fluid to his stomach.  The surgery takes about 1-2 hours and he'll have to stay in the hospital for a couple of days. I'm hoping he's in the PICU instead of the NICU this time. That way I'll be able to stay with him.  I'm also going to get some information from Boston Children's from a Dr. Warf. He's the best and also performs a proceedure called ETV. It's an alternative to a shunt. He's the only doctor that does it in children this young and has done a ton. No final decisions will be made until Monday when Dr. Shapiro (our regular neuro) will be back. The doctor we saw today didn't want to make a decision for him.

So today's been a tough one and a bit stressful and anxiety ridden. So I'm asking everyone to keep fingers crossed and send positive thoughts for baby Eddie. I also want to thank everyone for the support we've already gotten. We are so grateful for all of it!


  1. Just know that Bob and I are keeping your family close in thought and prayer - He's a strong little guy and can definitely feel your love!

  2. Saying a prayer for your little guy and your family! I have a 6 year old named Amaya with spina bifida. She has a shunt and has needed 3 chiari decompressions (which is rare!). She also has central sleep apnea because of the chiari and has a trach. She is such a love and does great in school! If you have any questions dont hesitate to ask!


  3. Holding good thoughts for all of you. Stay strong for that strong little man!