Waiting.  We have done a lot of that, and I am confident we have only scratched the surface.  As Alexander was an add-on due to the very unconventional nature of our arrival, he was scheduled for approximately 4pm.  The nurse took us to holding at about 4:15.  The start time was 4:55 with an allotted time of 80 min.  After kissing our angel, I went to the PICU room while Matt went to the room at the Ronald McDonald House to rest.  To our surprise, Dr. Brahma walked into the PICU room at 5:15 because the procedure was over and went perfectly. Alexander came back to PICU 6 at 6pm.  Matt was still at RMH, and when he got the news that the drain was in, he was surprised and hurried back to the hospital.

Trying to describe the next few hours is almost impossible.  As the anesthesia wore off, our angel was restless and difficult to comfort.  The EVD, a catheter draining the CSF into a bag, is stapled to his head.  We are staring at our beloved baby boy with a Medtronic device that is working toward alleviating his headaches by removing the extra fluid in his head.  He doesn’t understand what is happening, and it breaks our hearts constantly.  

A little later in the evening, they came to take blood.  We were distraught when we learned that they could not take the blood through the ports already placed.  We asked to use his finger because we just could not bear to see any more pain in that moment.  He screamed uncontrollably as she tried to get the volume she needed.  I was lying in bed with him the entire time trying to calm him down.  Nothing worked.  He yelled, “Get me —–.”  We couldn’t understand what he had said. We told him we would get him anything he wanted.  Then, we understood when he said it again.  He was saying, “Get me out of the hospital!” Tears came to both our eyes.  Because he was so agitated, the phlebotomist couldn’t get enough and had to prick another finger, prolonging all our agony.  When she was finally done, we just snuggled.  He asked me why I “left when he rolled.”  He and I talked for a few minutes until I understood what he was asking. He wanted to know why I wasn’t in bed with him when they rolled him down the hallway.  I told him I would tomorrow.

To avoid Sandi flying to Atlanta, I went o RMH to get a much-needed shower and refresh.

I left Matt with Alexander.  While I was gone, he was able to eat a very good dinner–he had said earlier he wanted a cheeseburger and mac and cheese, and that’s what he got (along with a cookie from Nurse Emily).  It must have been the best-tasting meal he’s ever had, and he relished every bite.  His instructions to Daddy were clear: one bite of food, then a sip of apple juice, then another bite, then another sip.  He loved the apple juice so much that he got a second juice box before bed.  After hearing him plead for something cold to drink and not being able to give it to him, Matt was ecstatic to be able to nourish him.  He was fairly content after dinner and dozed for a while, but he woke up and watched Spidey and Bluey as Matt kept him company.

Was so thankful to have a chance to grab dinner with Lane and Cody even though I was struggling a bit. 🙂

Later on, I walked from RMH back to PICU as Matt rests best in the real bed.  I was once again wide awake for a long time.  I eventually crashed but woke up again and moved into bed with Alexander.

At 7ish, I was awoken to sign the consent.  I was groggy and was hit hard when reading the words.  It was truly surreal.  Dr. Brahma came by and spoke for a bit, but I didn’t have many questions.

I asked Alexander if he wanted me to sing to him, but he said no.  I asked he wanted to read a book to him. He exclaimed, “Yes! I love books!”  I forgot I didn’t have any books.  Luckily, they had one book.  It was a Dr. Seuss book: The Eye Book.  I read it and was amazed to see a page filled with bees.  There was grandma again!  We were silly together and happy and in a great place to move forward.  Matt joined us, and we went to holding.

The little man was treated like a VIP. Dr. Brahma, Tammie, Carla, Terry, Patrick, Caitlin, Emily, Abby, and more!

9am in holding, 10:23 start time, intraprocedural MRI – no need for further resection, closing, case complete and Alexander doing well.

*Note regarding Monday: Because of my incredible Medtronic friends, we were able to go from a phone call to scheduled and in the ambulance being transferred in 3 hours and 25 minutes. Carla, Shawn, Bo, Linnea, Ash, Jyoti will never understand what they did for my family.