Wednesday, September 24, 2014

A speed bump gone wild.

Life has been incredibly busy! Up until Sunday morning I am proud to say that it was because we were living the life of a normal family! Walks, farmers' markets, errands, the park, dinners out, baseball out front... Unfortunately, busy has taken on new meaning since Sunday night.

For the last week and a half, Zacchaio had what we thought was an insignificant cough. It was so mild and infrequent that I considered it a teething cough resulting from increased amounts of saliva in his mouth at any given time. Surprisingly, on Saturday afternoon he woke up from a nap with a horribly runny nose and worsening cough, and within hours he was struggling to take a bottle due to excessive mucus and congestion in his nose. I couldn't believe how quickly it evolved. As resistant as Aidan and I were to putting the NG tube back in, we soon realized that a few days with an NG tube much outweighed a week of treatment at the hospital.

Putting the NG tube back in was no easy task. We had both forgotten that the last time he had one in was over one month ago when he had uncontrolled seizures, minimal purposeful movement, and little energy. Zacchaio made it abundantly clear that he did NOT want the NG tube and had us sweating bullets in the wee hours of the morning as we struggled to get it down. After a successful placement and subsequent feed, we put him back to bed only to discover four hours later that we had underestimated our baby boy. Still wearing the two pairs of socks we put on his hands to limit his dexterity, Zacchaio looked up at me wide-eyed from his bed as his NG tube dangled from his cheek. Really, kid? As frustrated as I was knowing we would have to battle the dreaded nasal passages yet again, a part of me was encouraged to see how inspired and capable he was to achieve a desired outcome. Your capabilities are endless, baby!

On Sunday we found him having longer coughing fits where his lips would start to turn blue. His work of breathing and respiratory rate suddenly increased and after seeing that his oxygen concentration was only 91% on our home pulse oximeter, I decided to pack our overnight bag and head to UCSF's ER.

We were a well-oiled machine. We knew exactly what to pack in his bag. Aidan and I started making our long-term plan regarding who would be staying at Zacchaio's bedside and when we would make our swaps. We prepared Alkaio for what the week ahead would look like and he was beyond understanding. Once in the ER, I described Zacchaio's clinical picture for the last two days. In order to remove the possibility for the staff to make inappropriate care plans, I informed them of which supportive interventions he would be in need of for his admission. And then he was admitted.

It was on his first day in the PICU that Zacchaio had a chest xray to rule out pneumonia. Thankfully it was ruled out, however the radiologist accidentally stumbled upon a concerning finding. Zacchaio's right arm was unintentionally caught in the xray and there was an area of lower density noticed in his right humerus (the bone that connects your shoulder to your elbow). They decided to do another xray of just the humerus for a closer look and after reviewing the images determined that the area was either a bone infection, tumor, or an entanglement of malformed vessels. To review it further, they did an ultrasound which has allowed the staff to say with certainty that there is an area of bone in Zacchaio's humerus that has been eaten way. What has caused the erosion? They aren't sure. A previous infection that is no longer present? An infection that is persisting? A tumor that is pushing on the bone? More questions than answers overwhelm the day.

We're awaiting further input from our genetics and orthopedics teams following their review of the images. An MRI of his humerus will give us the most information, however he is unable to complete the test now due to his acute illness and congestion (doesn't complement anesthesia well).

I'm hopeful that at some point in Zacchaio's life we will stop getting new and unanticipated diagnoses  every month. Until then I'll just continue marveling at what our little boy is capable of...

Eyeing his IV... Plotting how to rid himself of it...
So he pulled it out the next day.


  1. Extraordinary child....and family. We are in awe.

  2. I watch your dear little one's progress through this link shared by Barbara Malm. I pray that Zacchaio will continue to fight to overcome all of his medical challenges. He sounds like a winner, and I know God is watching over him.