The Hospital Course...

Four days ago physicians, nurses, and respiratory therapists were wide-eyed upon listening to Zacchaio's crackling and rhonchorous lungs. Most of them had never heard such a small person sound so horrendous. He was subsequently put on 6 Liters of high-flow highly concentrated oxygen to help support his ventilatory efforts and watched very carefully.

Up until this admission, Zacchaio's heart had been very obedient (if you recall, he was diagnosed with a very rare arrhythmia at birth). Unfortunately with his increased incidence of vomiting this week he lost therapeutic blood levels of his cardiac medications and therefore presented to the ICU with a nasty arrhythmia and a very high and uncontrolled heart rate.

He went without any food for a couple of days due to his continued risk for aspiration. High flow oxygen itself carries additional risk in that if he were to aspirate, the high flow can push whatever was aspirated deeper into his lungs and lead to aspiration pneumonia. Dealing with a hungry and cranky Zacchaio was well worth eliminating that risk.

In an effort to further eliminate his aspiration risk, they advanced his NG (nasogastric) tube to his jejunum to become an NJ (nasojejunal) tube.

 

NG tube vs. NJ tube 

Once his tube was advanced he was started on continuous feeds (as anatomically the jejunum cannot handle large amounts of feed at one time, such as to mimic regular bottle feeds, aka bolus feeds). It was incredibly unlikely that food would back up into his stomach now. Whew.

 

The last intervention in place was around-the-clock hypertonic saline respiratory treatments via nebulizer. It is thought that they reduce the edema (swelling) and improve clearance of thick mucus and secretions from his tiny airways. The treatments secondarily elicit a cough reflex, which in turn helped him cough up what was previously trapped in his lungs. Every time he coughed he sounded like a 50-year smoker with emphysema. The coughs themselves were so forceful they even caused some bleeding in his airway.

 

After all of these supportive interventions...

 

Ladies... Eat your heart out!

• After a gradual wean off oxygen the last few days, he's OFF OXYGEN entirely today! (Photo without nasal cannula to come soon!)
• His tube has been pulled back to his stomach... Welcome back NG!
• He has started small bolus feedings again and will continue to work his way back up to full feeding volumes.

His discharge home is anticipated to be tomorrow or Wednesday. Unfortunately with such timing, we are not going to make it to Boston in time for our Tuesday neurosurgical consultation. The good news is that everyone I have been in contact with in Boston is bending over backwards to make things happen for our baby Z.

 

We have a tentative new consult on Sunday, July 20th.... Amazing news!!

 

Baby Z will be Boston-bound shortly!

 



Aidan and I have been incredibly fortunate in our lives to always find ourselves in a position to give to those in need. We naturally gravitated toward service positions as a nurse and a teacher, and whenever donation pages appeared on our facebook feeds we felt a pull toward being a part of the support, love, and miracle individuals were seeking. Just as I think many of us do, we always felt invincible to the inconceivable.

 

I never imagined we would ever be on this end of the donation page.

 

Our family was overwhelmed with emotion at the creation of the Team Zacchaio donation page. And then just as we could get a centering breath between the tears of joy, the donations started appearing. Even though it feels like our gratitude will never suffice... Thank you. Thank you. Thank you.

 

The truth is, only God knows how Zacchaio's story will end. We pray every night that our boy will be healthy enough to live a fulfilling life here on earth with us and not yet with the Lord...

 

Regardless of where this adventure is going to take us, know that each of you are playing a vital role in helping us navigate the murky waters. You are aiding in the exhaustion of all options. You are giving him an opportunity to access the best care that our country can possibly provide. The rest is out of our hands. People from every part of our lives, past and present, have united for our son's cause and I never realized how beautiful it would be to witness...From family, friends, friends of family and friends, and SuperCamp, to church, volleyball, Castro Valley Unified, nursing co-workers, and ex-classmates.

 

No matter how his story ends we have so many wonderful things to remember, including the kindness and generosity you have shown us throughout.

 

We love you.