Port Surgery Day


Today is port surgery day, and right on schedule, our nerves are on edge. Still, laughter rings through the air. We depart on schedule. Unfortunately, traffic is a disaster in our sleepy little town. An accident on the interstate, someone will not be arriving home today, putting everything in perspective. We arrived at Hopkins a few minutes late. Chris realizes he forgot his wallet, which means he has no driver's license for his ID badge. Thankfully, we have been here. We have done this routine before. The three of us sit in the family surgical room.

Since our last visit here nine months ago, the only thing to change is the faces of the strangers surrounding us. We get settled into the pre-op area. Vitals are needed, and labs are completed. My signature, allowing everyone to treat our Baby Girl, has been signed several times. Jayde's nurses quickly discover why her surgery is necessary, as they have difficulty finding a vein for her IV. Twenty minutes later, they are successful. After she is fast asleep, I release her hand and exit the operating room. I walk out, thankful she cannot see the tears covering my cheeks. I could never bear to watch the surgery these skilled professionals are about to perform on my daughter. Still, I cannot stop the pang in the pit of my stomach prompted by needing to leave her. Like her prior surgery, this will not cure anything, but it should improve her quality of life. Chris and I walk the halls, eat lunch, and wait. It all seems too ordinary and natural — finally, it's time to see our Baby Girl and the beautiful smile that lights up our world.


Jayde is understandably groggy, and it is taking a while to get her pain and heart rate under control. Thankfully, we have a nurse who understands Jayde's illnesses better than the last surgery. It was a long day, but once we made it home, even though she felt rough, I could tell she was happy to be in her own bed. Now it's time to start dreaming about a wish trip to the West Coast.



Comments

Post a Comment

Popular posts from this blog

Rare Disease Day 2024

Image
  It's funny how ten people can hear the lyrics to the same song and interpret the words ten different ways. The first time I heard "Footprints on the Moon," I sobbed. The only person or thing I could envision was Jayde and her journey. I look at these pictures and am abundantly thankful for how far she has come. Still, I carry a hope that the brilliant doctors will soon discover the genetic links necessary to crack the elusive code, changing the face of medicine and our lives. I understand how fortunate Jayde is to have been placed with Johns Hopkins Children's Center. My immense gratitude for the few doctors who made it possible to still see those bright green eyes every day never wanes. To the average person, Rare Disease Day is just another day, yet to our family and many like us, it is 365 or, in this year's case, 366 days a year. There was a time when I heard the word rare, and my mind immediately thought of something beautiful, special, and unique. Anytime ...
Read more

Pride in Disabilities

Image
  July is Disability Pride Month, commemorating the Americans with Disabilities Act (ADA) that was signed into law on July 26, 1990. Until a decade ago, I took this law for granted. Sure, I had heard of it, but I was unfamiliar with its content. Inclusivity and accessibility are something most healthy individuals take for granted until they break a leg or need surgery. Then, the doors to a world of accommodations you pass by daily without consideration open. Our children are born, and we imagine what their lives will be like. Who will they become? What kind of hobbies will they enjoy? What types of friends will they have? What profession will they gravitate towards? You envision the places they will go, the things they will see and do along life's journey. In the end, none of it matters, only their health and happiness. Except what happens when health is not a part of life's plan? You begin to grieve the dreams you once had. Then you grieve for the dreams your child held dear t...
Read more

SMAS Day 2024

Image
Today is purple day in the Jackson household, but not because the Ravens are playing. Today is SMAS Awareness Day. Each year, I try to give a glimpse into Jayde's journey with this disease. Superior Mesenteric Artery Syndrome. What can I tell you that you haven't already heard? SMAS is so much more than nausea, pain, vomiting, and weight loss. This disease is relentless, it's frustrating, and it is heartbreaking. That is on a good day, and I am only the mother and caregiver. Yes, those are two very different roles, and I will be the first to admit that on the bad days, I find it challenging to figure out where one begins and the other ends.  About a week ago, I told a dear friend, "If I don’t answer when you call, it's because I am having trouble getting my arm out of the straight jacket."  The culprit of my most recent spiral into madness—Jayde's port. Along with her many illnesses, Jayde has Factor V Leiden Mutation. This is a genetic mutation that cause...
Read more