"Brain Trust" Meeting, Stitches Out, and Tour of PICU

Theo and I had a productive day at the hospital today. 

We arrived early so that I could feed Theo at noon (our appointment was at 1:00 PM) and then I could go to the cafeteria to get a chicken wrap.

We then headed to Interventional Radiology to see the two Nurse Practitioners, Mark and Jessica. They are both so kind and are some of my favorite people in our "Brain Trust." They removed Theo’s stitches (he was NOT happy) and then they told us how the “Brain Trust” meeting went. They said that ALL the doctors were there (plus their teams) and that they are all on the same page when it comes to Theo’s care. They are going with what Dr. Fraser wants, so they scheduled Theo’s Vein of Galen aneurysm repair surgery (I don’t know it’s official name) for February 15. Dr. Fraser will be performing the surgery with Cardiology and Neurosurgery assisting. After the surgery he will be moved to the PICU for 3-5 days for recovery. That is the time that he will be at the highest risk for heart failure so he will be monitored closely by our Cardiologist, Dr. Patel. Theo will also be closely watched by the Neurosurgeons because there is a chance his hydrocephalus could get worse after surgery. 

After talking with the Nurse Practitioner we met with a social worker, Deb, who showed us around the PICU. The rooms are small, but nice, and they are filled with state of the art medical equipment. Each room also has a couch (which can be converted into a bed) and a private bathroom with a shower. There are a ton of nurses and doctors around and safety is very important to them. There is also a "mothers room" where I can go to pump (but I'll probably just use our room) and there is a kitchen with a full fridge and microwave. I asked Deb if there was a place I could store my breastmilk and she showed me a special fridge where they would keep it for me. I wasn't able to meet him while on my tour, but the lead PICU doctor was also at the “brain trust” meeting so he is aware of our situation and he knows we are coming. 

The “Brain Trust” decided not to schedule Theo’s second surgery (the one to put in the shunt into his ventricles to drain the excess CSF and fix his hydrocephalus) yet. The Neurosurgeons will continue to monitor him and they’ll decide later if that surgery is needed, which it probably will be.