I can’t recall if I explained how hysterical I was when we learned about the tumor.  When the ER doc had said that a CT scan  was not clinically indicated, he also mentioned that a CT scan probably wouldn’t show anything, because it would only reveal large masses that are 0.5 cm or larger.  So when he said the mass is 4.2 cm across, I bolted from the room and lost my mind.  I didn’t hear anything else that was said. I had to process.

Last night, the intensivist on shift talked about transferring us to Lurie.  He grew up in Chicago and trained at Lurie.  Being so tired, and extremely sore from the ambulance ride, that was a lot to comprehend. 

I finally got my mind to settle at 4:30 and was awoken at 7:30 by Dr. Brahma.  He asked me to recap the history for him.  He explained that he wanted Alexander to have an EVD (external ventricular drain) placed today.  I should actually explain what this means.  Tumors can block the circulation of cerebrospinal fluid.  This can increase the pressure, impact brain function, and cause damage.  The EVD is placed temporarily to help reduce the pressure by draining some fluid off.

Sometimes they are placed at the time of surgery to reduce the number of intubations, but Dr. Brahma wants Alexander’s brain to have some time to rest and reset before surgery on Wednesday.  Dr. Brahma has had the chance to review the MRI, but we haven’t gotten to hear his thoughts yet.

I asked Dr. Brahma about the conversation about transferring to Lurie.  He and I both feel strongly that it is best for Alexander to stay put and move forward.  I asked him about how long we will be here, but that is hard to predict at this point.  I asked him what we lost by the EVD being delayed by a day and a half, and he gave me confidence that little to nothing was lost.  His partner will place the EVD which is typically safe and simple.

Matt flew to Atlanta this morning and has now arrived at the hospital.  We have met with someone from family experience and also from child life.  They check on our experience at CHOA and educate Alexander with a stuffed animal on what to expect.  The whole staff has been amazing so far.

The EVD will be this afternoon at 4:00-ish because we are an add-on.

I just thought of this this morning.  What is about to happen could reflect Earl Bakken’s vision for Medtronic.   We will alleviate Alexander’s headaches.  We will restore his sleep patterns.  We will extend his precious life.  All in one day tomorrow.

We now just wait. Waiting is so hard. All of this is hard. I know we have the absolute best care team and surgeon. We are near family. We have done everything in our power to expedite tests and get answers. We have pushed–no, shoved–our way to being transferred to CHOA to Dr. Brahma.  I am telling myself this as I write this. We, in the collective sense including you, have done every freaking thing that we can as fast as we could. We now must place our trust into these people to care for our Alexander.  I also know nothing will prepare me for seeing my angel bandaged and confused and that hurts my heart already.