Day 230 - "You almost made it...."

     The title of today's blog were the first words our primary doctor said to Cristy and me upon seeing us this morning.  It was a good way to break the ice after a tense past couple of days.  Let's back up a bit.  This morning Cristy was waiting to hear back from the clinic on when surgery might be ready to receive Evan.  Shortly after 8:00 they called and told us to bring him in.  Nolan and I left a few minutes later in order to finish our breakfasts and for me to pack a couple last minute items.  After sitting in Atlanta traffic for well over an hour Nolan and I finally arrived for the hand-off to my parents.  It was like a drug deal in a dark parking garage, except instead of heroin it was my two-year old son.  Nolan was more than thrilled to spend some time with Grandma and Grandpa as he kept letting me know as we got closer and closer to the hospital.

Awaiting results on his morning bloodwork.

     When I got inside Cristy and Evan were still in the waiting room, but were called back after about 10 minutes.  The nurse took Evan's vitals, drew blood and escorted us to an exam room for more waiting.  Fast forward another 20 minutes or so and we were able to meet with Evan's primary Oncologist.  The Dr. walked us through the MRI, what he saw and provided us his expert opinion on how we got here.  He didn't seem overly worried about the infections, which put our minds at ease.  The general thinking is that Evan's immune system essentially hitting rock bottom was the likely root cause of this most recent flare-up.  Evan's blood counts from earlier that morning were made available to us and it was encouraging to see everything had improved since Friday.  At the conclusion of our meeting we still had some outstanding questions, but these would have to wait for the Orthopedic and ID teams.

Getting my son ready for his first riding lawnmower.

     At this point in the day we were still anticipating surgery and tried to find things to do in clinic to pass the time.  We played arcade games and spent time with another couple that we met back in October who happened to be in clinic that day.  Two things caused us comfort issues, the first is that there were no rooms available in the cancer ward for us to go to and the second is Evan was NPO (nothing by mouth) until his surgery.  Around noon Evan started getting hangry and all we could do was wait.  As fate would have it they found a free room around 1:30; now we had to get this boy some food.

Kisses from the service dog in clinic today.

     We've never had a bad Aflac nurse, but we were happy to have one assigned that was very familiar with Evan.  She couldn't believe how good he looked with weight, hair and that million dollar smile.  She stressed to the surgical team the need to get someone down so we could get this little demon under control.

Getting a few smiles prior to eating.

     When the surgical team arrived it became obvious we were being pushed until tomorrow.  Cristy and I had a variety of questions around blood flow, the severity of the infection, what the surgery would entail tomorrow and how this would affect his mobility.  The plan is to leave the ankle alone.  The MRI shows inflammation and possibly a slight infection, but not enough to warrant further poking and prodding.  Evan's proximal tibia will be drilled tomorrow to relieve pressure and allow antibiotics to reach the infected site.  A drain line will be used again to help with recovery and evaluated over the next day or two.  Unfortunately we received news that the growth plate in Evan's ankle may not grow again.  This could impact him by about an inch and a half long-term in his right leg if the doctor is correct, but she said they'd know more over the years and could address it then.  Naturally we had more questions, but this blog is already long enough and I can cover it in more detail another day.  Evan is first on the surgery list so by the time I get to the hospital tomorrow he should be in the room sleeping off the anesthesia.

Taking advantage of the toys at CHoA.

     The ID team visited with us later this afternoon.  They felt the Keflex should have kept the infection in check, even with lowered WBCs.  The fact that it didn't leads the ID team to believe we may need to switch to IV based antibiotics and possibly even another drug.  They'll know more later this week once the biopsy samples come back from the surgery tomorrow.
     Evan is in good spirits.  He's more worried about a band-aid getting pulled than someone putting him to sleep for a surgery.  While he's under tomorrow the Oncology team wants to do another spinal tap.  The medical team is still discussing his port installation, but in the meantime it looks like we're stuck with the PICC for a while longer.  They also want to perform an IVIG infusion, if his numbers deem is necessary, and check his Voriconazole levels.  Quite a few things planned for tomorrow, with subsequent steps pending the results from other various tests.
     Cristy and I are holding up better today.  When we hear about these chronic infections in his leg we instantly think the worst.  Despite not always liking the news I hear it's still comforting to at least have answers to questions.  My best guess is we'll still be admitted through the weekend, especially if they want to switch us to IV based antibiotics.  Those can't be acquired at your local drug store and have to be sent directly to the house within a climate controlled packaging.  It always takes time to procure this so Monday seems most realistic to me, however I'd be thrilled if I was wrong.  Hopefully there will be no more surprises this week and we can get Evan home to continue our battle.  Thanks to everyone who has reached out with kind words or offered support!

The best serious picture I could get.