ZACHARY

This is Zachary Johnson, who is one of twin sons of a fellow moms of multiples friend of mine. Her boys were born about 6 weeks before my boys in summer of 2006. Sadly, Zachary has been very sick since birth and has struggled for life since he was born. He is now first on the list for a liver/small bowel transplant; they are praying for a donor any day now.

Born two months premature on July 2, 2006 (along with twin brother Aidan), and weighing only 2lbs, 10oz, Zachary was diagnosed with necrotizing enterocolitis (NEC). NEC is a very devastating disease which invades parts of the infant's intestines and effectively kills the bowel tissue. Without healthy tissue, food nutrients pass quickly through the intestinal tract. Within his first 5 months of life, tiny Zac underwent 4 surgeries which left his intestines disconnected, but doctors wanted to wait until his intestines starting absorbing nutrients before they would reattach them. Brother Aidan was able to go home after 3 weeks in the NICU, but after several months of false hopes for Zac, Brian and Deanna stopped trying to guess when Zac would be able to go home. Despite his rough beginning, little Zac remained in good spirits, flirting with all of the nurses and providing Mom and Dad with plenty of smiles.

Finally, after 8 months and weighing almost 11 pounds, Zac was able to go home in February of 2007. Armed with various equipment and more medical knowledge than they ever wanted, Brian and Deanna were finally able to have the whole family under one roof. And on a few rare but wonderful occasions, they could look at both boys sleeping in the nursery at the same time.
Unfortunately, since Zac’s intestines were not able to absorb food, he was on continuous IV fluids. Even though these fluids are life saving, they can also damage the liver if used over a long period of time. For a while, Zac’s liver made improvements. Doctors even thought he would not need a liver or small bowel transplant, and Brian and Deanna spent months hoping they would schedule the surgery to reconnect his intestines.

But Zac has given his parents a roller coaster ride from the beginning, and he wasn’t about to stop now. For many months, his health went up and down as he continued to fight off infections, and he had to go back to the hospital twice for short stays. He was finally able to undergo the reconnection surgery shortly after his first birthday in July of 2007. This amazingly strong and resilient boy has had six surgeries since birth and he has bounced back against all odds. Zac went home after 3 weeks.

On Wednesday, August 15th, Zac gave his family their biggest scare yet. Brian and Deanna raced Zac to the hospital as he was going into shock from liver failure. At that point, it was determined for certain that Zac needed a transplant, and as soon as he was stable enough for transport, he was flown to Children’s Hospital of Pittsburgh, where his health continues to bounce up and down. Currently Zachary is in the Pediatric Intensive Care Unit (PICU) awaiting a double organ transplant (liver and small bowel). The good news is that he is at the top of the list and will be first in line when a suitable match is found. The bad news is that there is a reason that he is at the top of the list for he is very sick. Unable to even hold Zac, Brian and Deanna take turns sitting by his side every day, waiting for the opportunity to give him a second chance at life.

Our MOMs club is taking an active part in fundraising for Zachary's family. Although they have insurance, the out of pocket costs associated with being away from home to be with Zachary are much more than we can imagine (food, lodging, gas etc.). In Severna Park, MD, volunteers have begun a fund-raising campaign for Zac. These funds will be used for medical, living and travel expenses not covered by insurance. The organization COTA (Childrens Organ Transplant Association) is backing the fundraising efforts - the local volunteers are simply collecting donations and helping however we can.

I have some bracelets for sale for $2, and some magnetic car ribbons (like the ones for soldiers) for $4 each. If you are interested in purchasing one, please let me know. It's a great cause and one that hits really close to home. There will be a local bake sale coming up in Severna Park as well - if you are interested in baking something to donate or attending to buy some yummy baked goods for the holidays, I will be happy to forward you the details.

I cannot imagine all that Zachary and his family are going through. This vigil has been going on for well over a year - Zac still has a long way to go but with lots of prayers, hopefully he'll get that donor soon and be on the road to recovery!