Anna is our latest guest blogger. She is a mom of two and lives in Southwestern Virginia. Her post captures her journey of last year, when she discovered that her son had a rare congenital disease. If you too want to write or post an entry on our blog please contact us at firstname.lastname@example.org
This post may not be particularly well written and it won’t be funny. It is a story I need to tell. And hey, thanks for stopping by. More of you read this than I ever thought would and many of you have said very kind things. It warms my heart and I appreciate it.
Tomorrow is an anniversary for my family. Tomorrow, one year ago, we got up at 4:30 am to take our son to the hospital for life-saving surgery. One year ago, I kissed my son goodbye and prayed harder than I’ve ever prayed while the good doctor performed a miracle.
October 2011 was not my favorite month. My mom fell down our basement stairs and broke her ankle into a million pieces. Just a few weeks later, we discovered a lump on our son’s neck. At first, we tried not to pay attention because it was very small. Within a week, it was enormous. We c couldn’t get in with our pediatrician and saw a nurse practitioner. She took one look at his neck and said “I’m going to get the doctor.” We were immediately sent to the hospital for an ultrasound. The next day we had an appointment with an ENT that generally has a five month waiting list.
I’d never heard the words “thyroglossal duct cyst” before that day. It is a rare thing, a congenital thing, and usually shows itself in preschoolers and adults. So, Ezra had a thyroglossal duct cyst and it was seriously infected. The goal from that first day on was to try to get him well enough to have surgery. The placement of the cyst was complicated, basically in his airway. He was struggling big time with asthma as well. We saw the ENT at least once a week and often twice. He would take our phone calls on Saturday nights or Sunday mornings.
It took three months to get him well enough for surgery. We had a failed attempt in December of 2012 in which he stopped breathing on the operating table not once but twice. We decided to take a month, another round of antibiotics, and another round of steroids.
For three months, Ezra ran a fever, had an ear infection, asthma and a major cough. We spent lots of time in the emergency room when breathing treatments at home weren’t enough. Turns out our home was full of mold as well.
I was pregnant and exhausted and working 35-40 hours per week with the craziest hours imaginable. Just needed to throw that in there.
We finally got him well enough to try again and we met my parents at the hospital at some ungodly hour. I will never be able to describe the terror I felt then. The night before Ezra’s surgery, I held him in my arms and cried. There sat the best thing I’ve ever done and I knew that if I lost him, I’d die too. I was so afraid. Every night I’d lie in the bed, listening to him cough and feeling my heart break again and again. I cried every night. I couldn’t even think about being pregnant, it was all too much.
Sitting in the waiting room was excruciating. Dr. P had prepared us for a long surgery. He thought it might take up to four hours but we had no clue. After only an hour and a half (the longest hour and a half of my life), the waiting room phone rang and it was for me. Dr. P was on the other end. “It’s over! We’re done!” He told me that he felt 99% sure that he’d removed the entire cyst and he’d also removed the middle part of the typhoid bone. The swelling was so great from all the infection that we’d have to wait before we knew it was all gone for certain. I hung up the phone and bolted from the waiting room. I have never needed to get out of anywhere as much as I needed to get out of that room. The tears came when I got to the parking lot and found the husband. Relief washed over me in waves. I wept.
Finally, I was allowed in the recovery room. I got in bed with Ezra and held him as he woke up. His black curls were spread out over the pillow and he was pale. He had a bandage on his neck and he looked so small lying there in is his tiger print hospital gown. I held him and thought about the night he was born. I remembered how I felt when I saw him, “Ah, there you are. I’d know you anywhere.”
We moved to a room in the pediatric unit. I sat by his hospital crib and watched him sleep. I was giddy with relief. We only had to stay one night and spent the next few days at home spending equal time resting and playing.
Our journey wasn’t over. Ezra had another surgery and a few more scares before his neck healed completely. Dr. P told us that he’d never had so much trouble with a thyroglossal duct cyst, nor had he seen one in a patient so young. The whole process took 8 months.
Last week, we went for our final visit with the good doctor. We’ve come such a long way since last January. I am now a stay-at-home mom. We welcomed our baby girl in May and she is a princess. We’ve watched Ezra grow into a sweet and hilarious 2-year-old. His asthma seems to be gone. He sings, dances, talks and loves life. Last year seems like a distant nightmare.
He will always have a scar on his neck. When I look at it, I have such gratitude to the universe and God and Dr. P for saving his life.
I want to thank my parents for dropping everything to help on numerous occasions, even when one of them had a compound ankle fracture. I want to thank our babysitters whether they are reading this or not. Most of you worked for free and keeping a sick kid is no fun at all. Without you, we would never have been able to go to work (not that we wanted to leave our sick baby but sometimes you don’t have a choice).
The end of 2011 and most of 2012 was hard. I couldn’t be more glad that it’s over. Some years are so hard that they give you PTSD.
How to end a post like this? I have no idea. But I have to go because Miriam just properly crawled for the first time.
In the words of e.e. cummings: “thank you God for most this amazing day”.
Visit Anna’s blog at http://annythemommy.wordpress.com/