Thursday, December 17, 2015
First, a sincere “Thank You” to everyone who has offered prayers and support to our family. Baton Rouge has overwhelmed us with so much love since we first made news about Drew public nearly two years ago. I have come to believe in the innate goodness of people; and how could I not with the way friends, family and total strangers alike have gone out of their way to support us physically, spiritually, emotionally and financially.
A (very) quick refresher of Drew before I get to this most recent update. In March 2014, Drew was diagnosed prenatally with Congenital Diaphragmatic Hernia (CDH), in which a hole in his diaphragm allowed his abdominal organs to migrate into his chest compromising his lungs and heart. A consultation at Texas Children’s Hospital for a rare fetal intervention discovered a heart defect in addition to Drew’s CDH. Genetic testing found the genesis of Drew’s issues is a rare chromosomal defect known only as 8p23.1 Deletion Syndrome. We transferred care to TCH where Drew was born on July 18, 2014. He spent seven months in intensive care, during which time he underwent five surgeries, including two heart surgeries 13 days apart. We were discharged in February 2015 and returned to Baton Rouge. Drew had a sixth surgery back in Texas this April.
People often ask me if Drew is “in the clear” or done with surgeries. I understand why it is a common question, but the truth is that with Drew, there is no “common” or “ordinary.” Erika and I had to acknowledge long ago that Drew’s “normal” would be different from most everyone else’s—and we are perfectly fine with that. This most recent issue was a reminder that Drew’s health can often take sharp, unexpected turns.
We were preparing to spend our first Christmas at home together when we went to a scheduled doctor’s appointment for Drew to get his RSV shot. When his pediatrician listened to Drew breathing, she heard bowel sounds in his chest. We knew at that point that he has re-herniated and would need surgery very soon. That ended up being this Tuesday, only 12 days after we learned of his hernia.
As for the surgery, it went very smoothly. Because Drew still has a lingering heart issue, for which he takes medication daily and may again need surgical intervention, and pulmonary issues with only one fully functioning lung, any surgery is met with serious risks. The procedure lasted about six hours and went as well as could be expected. Potential complications that could lead to Drew requiring a breathing tube or chest tube did not arise. In fact, once the surgeon worked through old scar tissue, he noticed there was enough diaphragm to path the hole and did not need to use a synthetic patch. This is beneficial because it’s unlikely a natural barrier will reherniate like a patch might.
Once Drew was out of the operating room, a secondary but equal challenge of recovery began. As you might imagine, a six-inch belly incision on a baby might lead to a lot of pain and discomfort. To manage this, Drew has an epidural in his spine, which continuously administers local anesthetic to his abdominal area. He is also getting doses of morphine, Tylenol and Torodal for pain. His team of doctors has to manage a delicate balancing act with these medications to ensure they don’t react negatively with the medicines he already receives for his heart and lung issues.
Fluid balance is also a major concern with Drew. Anytime a person has surgery, the body’s natural response is to hold on to fluid. Drew has trouble shedding fluid as it is because of his heart condition, something for which he receives medicine daily. The major risk here is that if Drew becomes fluid overloaded, his heart could have to work too hard, which could lead to potentially serious issues. One big challenge the past 24 hours has been taking this fluid off Drew without dehydrating him. This could be one of the conditions that extends our stay at TCH.
Typically, the first three days after surgery are the toughest, requiring the most medication. That has certainly been true with Drew, nearly 48 hour out of the OR. The longest he has slept consecutively is two hours, waking up in some sort of pain, discomfort or disorientation. He is old enough now to know that he’s not at his house and doesn’t want to be lying in a bed all day. It is impossible as a parent to watch your baby suffering without being able to take away that pain. The reassuring thing for me and Erika is we know we will see our happy boy again soon enough is we diligently weather this post-op period.
As of now, we do not have a target discharge date. Our surgeon always says, “As long as it takes,” which is absolutely the right answer because not two cases are exactly alike. Optimistically, we hope to be home for Christmas, but we know there is no guarantee. In any event, the best present we could ever receive is having Drew with us.
One of the striking realities about a place like Texas Children’s Hospital is the stark contrast between joy and sadness around every turn. Centers like this give families like ours reason for hope. At the same time, grieving families serve as a daily reminder that not all are as fortunate as ours. So, as you continue to offer love, support and prayers for Drew, please remember all the families at TCH and hospitals around the world who might not have a happy outcome.
Thank you for loving our child and being #TeamDrew!
Matt, Erika and Drew Moscona
PS – We can’t offer enough thanks to our friend Jacques Doucet for the work he has done to organize the “Red, Rock & Drew” benefit concert Friday at The Varsity. Thanks also to Alex Bregman, Paul Mainieri and Jeff Marx who have offered their time to be at the event to help raise money and make it a giant success! If you can, please buy a ticket, attend and encourage others to do so. Tickets are available online here: http://www.varsitytheatre.com/newevents/red-rock-drew
T-Shirts courtesy of Eric Hedrick and Bengals and Bandits are available for purchase with proceeds going to Team Drew: http://bengalsandbandits.com/Team-Drew.aspx