Saturday, May 3, 2014

Acute illness is not even a little cute.

About three weeks have passed since my last post and our lives have been a bit tumultuous to say the least.

Acute illness is not even a little cute.

Out of the 7 weeks Zacchaio has been home, 4 1/2 of those weeks have been spent struggling to overcome croup and two viral illnesses. There is a reason that babies under the age of 3 months aren’t supposed to get sick...When he first showed signs of acute illness, Zacchaio’s adjusted age was only one month, meaning his anatomy was the equivalent size of a one month old’s. His airways were small and he had a very difficult time handling the thick secretions in his lungs. This led to him having difficulty with the coordination of breathing, sucking, and swallowing while eating. This has subsequently led to frustration, a lack of interest in eating, and ultimately a decrease in his weight. He's maintained 10 pounds for the last month. The decrease in his weight is a concern for a couple of different reasons. One, he doesn’t have enough calories to fight off the infections, and two, stunted growth hinders lung development (hence perpetuating the cycle).

Our growing concern for his failure to thrive led us to a fantastic pulmonologist yesterday. He wanted to admit him to the hospital for close observation of his respiratory status and place an NG tube to support him with his feedings. His logic is that although Zacchaio needs to fight through the acute illness on his own, we can support his caloric intake through NG feedings so there is no expenditure of energy. He hopes this will help him come out the other end a little faster.  After talking to us at length, he decided under his close supervision and frequent check-ins (though he’s never allowed it before), that Aidan and I could take him home and place and manage his NG tube on our own. I officially crossed the mom/nurse border yet again yesterday with successful NG tube placement and minimal discomfort on Zacchaio’s end. For now our lives continue to be bound by the four walls of our home with sounds of copious yellow secretions echoing through the nasal aspirator. It has been heart-breaking watching him struggle, whimper, and cry real tears over what seem so petty in the greater context of his health problems, but he continues to be so patient and tolerant of it all.
Zacchaio with NG tube. (Placed 5/2/14)
It’s been quite some time since I’ve seen his sweet smiles, but he must be feeling better because they’re back as of today! Nothing could bring me more joy than that lovable gummy grin of his!
Moving on to his chronic conditions…
We saw dermatology for the first time since our NICU discharge. A rarity in our experiences with UCSF medicine/physicians, we weren’t very impressed with the quality of the appointment. It was very narrow scope and unhelpful. They looked at his skin from head to toe, did a series of “mmhmms,” (which we’ve come to expect now that he’s a genetic anomaly) said everything looked about the same, then stared at us until the awkward silence inspired us to leave. I took that as my cue to fire off the many questions I had regarding current skin care, future treatments, collaboration between specialties, etc. I think I got under their skin a bit (no pun intended, hehe), because in an effort to cease my question-asking they said, “I think we should get him on the list for our BVAC Conference (Birthmarks and Vascular Anomalies Center).” Bazinga! That’s more like it! The BVAC Conference is made up of a specialized team of physicians (plastic/laser surgeons, dermatologists, neurologists, orthopedists, etc.)  who meet 9 times per year and discuss current and future treatment options of rare/special cases. If anything, this reaffirmed how much of an advocate we need to be for Zacchaio. Conference is on May 9th… More on that soon!
Schimmelpenning syndrome
A picture of Zacchaio's nevus skin at his dermatology appointment.
He rocks his spots! And his overgrown man nipple... ;o)

We also saw an orthopedist regarding Zacchaio’s hemi-hypertrophy. Although we hear it constantly, the words still make me cringe every time, “We’ll just have to wait and see...” There is no predicting how much longer Zacchaio’s right-sided limbs will become compared to his left. The long-term plan is at around ages 11-14, he’ll have an epiphysiodesis (surgery which removes part of the growth plate in his longer leg). Removing the plate will stunt the growth of his longer leg and allow his shorter leg time to catch up. In the meantime, he won’t get another set of full-body xrays to quantify the lengths until he has started walking. Just before he starts walking he’ll get a custom shoe lift to try and minimize the leg discrepancy and risk for scoliosis. We also got a referral for outpatient physical therapy, because there’s no harm in being proactive!
Zacchaio’s heart arrhythmia has only modestly changed, but for the better! The cardiologist continues to see more and more normal sinus rhythm. His heart is also requiring less medication to control its rate which is why we’re letting him outgrow some of his doses.  
Neurologically, Zacchaio is still hitting his adjusted milestones. I thank God most for this one!  
To all of you who remain interested and supportive in Zacchaio’s journey, thank you!! We continue to pray for miracles!
We didn't get to celebrate the Big Fat Greek Easter we had hoped for on account
of Zacchaio being sick, but we made the best out of it!


  1. Thank you for pouring your heart into this beautiful boy and also into your posts. My prayers include you and your family and I hope that love will heal this baby, because he has so much of it around him. <3 <3 <3 Vicki O'Grady

  2. Love you guys! Love the updates. Your resilience is so encouraging. Praying for continued progress, milestones, favor, rest, and God's super on the natural.