Nathan at Children's Hospital in New Orleans - pulmonary function tests.
Stressful, stressful, stressful. That’s how I would describe these past few weeks. I always dread Nathan’s annual checkup.
I know exactly why I have a hard time settling down. Nathan’s heart surgery about five years ago was the most stressful event our family had ever faced. When we got the news that the surgery was a success, we felt so joyful and relieved. It felt like an enormous burden had been lifted.
As he was recovering at home, we decided we needed to have a pediatric orthopedist take another look at the little deformed vertebra he was born with. We had been told to be on the lookout for scoliosis. His back looked nice and straight, so we weren’t particularly worried about it. But we wanted to play it safe–make absolutely certain that his back was A-okay.
So I set up an appointment about 3 months after that harrowing heart surgery. I didn’t even bring Bryan for support. I could handle this by myself because I was dang-near certain there was nothing wrong. Heaven help me–I was so wrong.
A side view x-ray revealed that he had congenital kyphosis and needed spinal fusion surgery. It was awful to hear that he was looking at another surgery, and it was going to involve a difficult recovery, a body cast, and a body brace.
Now, I can’t help but feel this sense of dread when I go to these checkups. I always wonder: Is someone going to surprise me with some more bad news?
Echocardiogram
We saw three different specialists this week. First, we got some advice from a pulmonary doctor. A component of Nathan’s scimitar syndrome is that he has a hypoplastic lung. The top third of it functions, but the rest of it is practically useless. We know he has allergies, but we have also suspected he has asthma.
After pulmonary function tests, it was determined that he did, indeed, have asthma. He will need to use an inhaled steroid each day to improve the inflammation in the alveoli of his lungs. This will prevent further damage and improve his lung function. I am very, very glad we met with this doctor.
Next stop: cardiology. After an EKG and echocardiogram, the doctor informed us that the baffle created during Nathan’s 2006 heart surgery appeared to be functioning just fine. Instead of coming every year, he suggested every two years (!) would be reasonable. Felt so good to hear that.
Finally, we took x-rays to see how that spinal fusion was holding up. This was the moment of truth. Oh, oh, oh–I was so nervous. Last year, we were told the fusion had solidified nicely, but it was starting to curve. The curve was at 43 degrees. If it reached 50 degrees, he would need another surgery.
Had the curve worsened? Yes. But… It had only worsened by one degree. And the doctor elaborated on what we were looking at if a growth spurt causes the curve to hit that dreaded 50 degrees. Instead of the big deal surgery he had back in ’07, he would cut through a simple layer of skin directly to the spine and place a few bone grafts. He would be released the next day–no body cast, no brace. I could live with that.
All in all, a good day. 
Tags: echocardiogram, EKG, heart surgery, hypoplastic lung, Scimitar Syndrome, spinal fusion
Delaney Watkins is on a mission to educate people about Mitochondrial Disease, the disease her two-year-old brother has. “Would you please consider posting this page on your blog?” she writes. You bet I will, Delaney!
My name is Delaney, and I’m 14 years old. My brother, Grant, who is a twin, has Mitochondrial Disease. For 2 years, I’ve watched my brother get sick, and I couldn’t do anything to help him. I couldn’t really talk to my friends about it because none of them have ever heard about Mito, and I hated going through the explanation every time. Even in school, we spent a week talking about what Mitochondria do, but the teacher had never heard of Mitochondrial Disease.
I read about a contest through the UMDF about spreading awareness. It made me start thinking about what I could do, and my Aunt gave me an idea. I decided to start a Facebook page to explain Mito in a way I could understand it. It was something I could tell the people I know to read so I didn’t have to keep explaining it. I decided not to enter the contest, but I am going to keep the page growing as long as I can.
I started by posting the link and asking other people to do the same. In one week, I had over 6000 people like the page. That means 6000 people might have learned something about Mito. I’m asking for your help to keep the page growing. All it takes is sharing the page with others.
I would love to have any suggestions for ways that I can get more people to view the site.
This is a Channel 8 news report done about the page:
http://www.wfaa.com/news/health/Teen-raising-profile-of-little-known-disease-128652233.html
Here is the page:
Http://www.Facebook.com/wishgrantedproject
Please view the Facebook site on a regular computer, because it doesn’t show up right on a cellphone.
Thank you,
Delaney Watkins
Tags: Delaney Watkins, Mitochondrial Disease, Wish Granted Project
In mid-August, Sam wrote requesting prayer for her son, Lucas, who needed surgery to correct Truncus Arteriosis, a rare congenital heart defect. I received an email over the weekend reporting that the surgery went well!
“We were discharged yesterday and he is recovering quite well. I would like to share with you a photo of him from the day we were discharged. He now has pink nail beds, which used to be quite purplish. I know that you share our joy in this miracle…”
Sam also sent 2 beautiful photos of Lucas–the smile is fabulous!
Tags: congenital heart defect, heart surgery, truncus arteriosus
Want to win a copy of Veronica Janus’s book, Abundantly More? Read this August 22nd article and post a comment. I’ll put your name in a hat and get Nathan to draw the winner on September 5, 2011.
Tags: Abundantly More, Nathan, Veronica Janus
This week, Veronica Janus releases her book, Abundantly More: A Mother Clings to God as Her Infant Clings to Life. “Abundantly More shares my journey of hope and healing,” writes Janus, “and it also offers practical knowledge on how to navigate life in a pediatric ICU.”
I’m not aware of many memoirs written about a family’s struggles with their child’s congenital heart defect. Veronica is painfully familiar with the ups and downs of loving a child with serious medical issues. She shares the following article, “What Now? Finding Support after Discharge” with Nathan’s Prayer:
When you are a part of something long enough, it becomes your normal… even if it is not normal. Being trapped in a pediatric intensive care unit for weeks or months is not normal, but it becomes part of you. After a while it is familiar and perhaps even comfortable. It is the only world you know. You are forced to live in it and its boundaries.
Eventually you leave the ICU, hopefully with a cured and healthy child. You go home to what used to be your normal, but has now become foreign territory. So you are forced to adjust quickly—again. There are no more nurses caring for your child around the clock. You are now the nurse. There are no more doctors visiting several times a day, diagnosing and observing. You now play that role. There is no one to administer medication, feed your child, change your child, and do their laundry on a daily basis. You now do it all. It can be scary, lonely, and you may feel deserted.
You are not alone. For every childhood illness, disease, or syndrome there is most likely a support group. While we were still in the hospital with our son, who was born with Congenital Heart Defects (CHD), a mom whose son also had CHD, told me about a support group. I did not pay much attention to this information at the time because I did not know when or if my son would make it out of the hospital. But today I feel fortunate to be a part of Mended Little Hearts and share our lives with other CHD families. Mended Little Hearts is a national organization that partners with hospitals to “…connect families in crisis with other parents who have survived the shock of learning a child has a heart problem, navigated the maze of medical decisions and procedures, and mapped out a plan for the future.” (http://mendedlittlehearts.wordpress.com/)
A few weeks ago several Mended Little Hearts families in the Chicago land area came together to celebrate our heart babies during the Valentine’s holiday. It was so special to see these little miracles run around and play like other healthy kids. It is a privilege to be a part of a group like this where there is opportunity for support, friendships, education, volunteering, and fundraising.
If you are a part of a support group please share with us your story! You are welcome to share pictures, links, or any other information that could help others, just use your discretion and respect privacy. Thank you!
Veronica Janus is a mother, writer, and the founder of Forever Moments, an organization that gives families with babies in the ICU hope and joy through photography (2009-2011). The author was born and raised in Sweden and moved to the United States to pursue undergraduate and graduate work. She holds an MA in Theater and Communications and a MEd in English. Veronica lives in Chicago with her husband and three young children.
Want to win a copy of Veronica’s book? Post a comment. I’ll put your name in a hat and get Nathan to draw the winner on September 5, 2011.
Tags: Abundantly More, congenital birth defect, heart, Nathan's Prayer, Veronica Janus
