A Special Life: Being Sick.
I am sitting in an ICU waiting room, anxiously waiting to see Brinley. She has been gone for over six hours for surgery to replace her MAGEC growth rods in her back. She had large screws placed in her pelvis, and I know she’s in an enormous amount of pain. I hate not being there. She’s intubated and every time they give her pain medicine she stops breathing. And here I sit. Unable to hold her hand, kiss her, or tell her it’s okay. She may not be able to speak, but I’m her mom so she doesn’t need words— I can feel her silent screams for me.
I never anticipated how sick my special girl would be. Just when one problem is resolved another appears. We have spent countless days in the hospital including birthdays, Halloween, and New Year’s. This year I will probably be here on my son’s first day back to school. Holidays aren’t put on hold for a hospital stay.
As a mom, my special child being sick has taken over my life. I have taken her to the doctor’s office only to be rushed to the ER. Crying the entire way because, I felt my inadequacy at handling her needs boiling over. I’ve pulled off of the highway as cars rushed past me, to try and clear Brinley’s airway. I have called for an ambulance in tears and panic. I’ve been woken from a deep sleep by a nurse telling me she isn’t breathing. I’ve slept on hospital chairs, recliners, couches, crammed in a hospital bed with Brinley, and if I’m lucky a bed of my own. I have cried to nurses, doctors, respiratory therapists…basically anyone who was in my vicinity at the moment of breakdown. I’ve lost my cool more than once on doctors whose bedside manner is lacking.
I can tell you what Q4, Q6, and PRN mean. I can find the best vein for IVs. I speak the respiratory language of peep, french catheters, tachycardia, saturations, and respiratory rate. I know exactly how many calories Brinley gets a day. I can explain proper myelination versus hypomyelination and demyelination. I don’t have any medical training, but I can speak the language of Brinley’s health fluently.
With a special life what you see on the outside is only a small part of what each child deals with. You see a body that’s frail or abnormal, but what you don’t see are collapsed lungs and a twisted spine. You see skinny legs but not brittle bones that break with a twist the wrong way. You see a stomach with holes for feeding tubes, but you don’t see dried blood draining from her tubes because of a terribly inflamed esophagus. You see a floppy body, but you don’t see the horrendous muscle cramps that bring her to tears.
When Brinley was eight years old, I received a call that something was wrong, and she was crying uncontrollably. When I went to pick her up from school she screamed every time I moved her. I was wracking my brain trying to think of what could be wrong. She was crying incessantly, and I couldn’t calm her down so I texted the orthopedic surgeon to see if it was a possible complication from her growth rods. He said it’s likely a broken femur, and we were to get to the hospital. Sure enough, we get to the hospital and she has a break popping out of the x-ray. We have no idea how it happened, just that it occurred at school. After this incident when she returned she was able to have a full time nurse with her throughout the school day. I think the district was happy she was better and that we didn’t sue.
Brinley and other special kids have a life that’s a constant battle with their bodies. While most kids are figuring out what they want to be when they grow up, Brinley’s trying to stay alive for another year. They’re trying to decide which sport to sign up for and we’re trying to get her to tolerate sitting up for an hour.
Brinley’s condition causes neuromuscular problems such as scoliosis. She has had severe scoliosis since she was a toddler. Her spine was twisted so much that one side of her pelvis was much higher than the other, and her organs were forced into odd positions. Her left lung is still partially collapsed because of her spine’s position. Due to the scoliosis she has pain when sitting, excessive vomiting because of her stomach being forced upward, and recurrent pneumonias. She wore a back brace for a few years, but then the scoliosis started getting worse despite the bracing. We had to make the decision to have a major surgery which involved placing rods on either side of her spine to try and improve her scoliosis by slowly forcing her pelvis to straighten.
In the end we decided to do the surgery, and although we felt like it was the right decision, it was ROUGH. The cost was a complicated surgery, nearly three weeks in the hospital — most of it in the ICU — two pneumonias, one virus, two intubations, and nearly losing her.
When Brinley gets a cough, I make sure my hospital “go” bag is locked and loaded. Let me change that…I always have a hospital go bag, but when the cough starts I make sure everything is still in there and it’s close by. I don’t know at what moment she will begin struggling to breathe, or stop reacting to respiratory treatments. I have to be ready to go whether it’s in my car or on an ambulance, during the day or middle of the night.
Brinley averages three or more hospital stays each winter due to illness (usually pneumonia). One of the worst experiences for her was when she got the flu. She was working hard to breathe and falling asleep often. My husband and I decided she needed to get to the ER. Aaron, Briggs, and I were also sick, but I was the most well so I went into the hospital alone with her. When we arrived they rushed her back to triage and things were worse than I realized. She was in critical condition and non-responsive. She just laid there with her eyes closed, skin pale and graying quickly — I could feel her slipping from me. Before the team of doctors began intubation I put my head right by her’s, my tears soaking her face, and whispered, “please, please keep fighting Brinley! I know you can beat this.” The doctor looked at me and asked if I wanted him to do everything possible to save her. I hate that question. I’ll let you guess the answer.
She was septic and rushed to the ICU with the flu and pneumonia. The next couple of weeks we were in the hospital with ups and downs, fever, secondary infections, and pneumonias. I didn’t get a pass from being sick either. While she had the flu, I was finishing my own bout with the flu and developed a sinus infection. When you’re mom though, you put on the face mask and deal with it.
There is no time off with a kid who’s constantly sick. When I’m not at home trying to diagnose the latest problem, I’m monitoring what’s happening at the hospital. Most of the nurses, doctors, and specialists are great at what they do, but sometimes mistakes happen. I have had to correct the wrong food given, allergies that don’t exist on her chart, feeding through the wrong tube, and more serious issues. I’ve woken up to alarms going off and Brinley struggling to breathe without a nurse in sight. I have cleared her airway, yelled for doctors, and called them out when a problem is missed — I am always on alert.
Sick is a constant part of the special life. Sick keeps us isolated in the winter. Sick means we know the faces of nurses, doctors, and therapists in the hospital. Sick keeps our family separated for days and weeks at a time. Sick means life or death decisions.
Being sick is a shackle attached to a special life. No matter how hard you try it can never be removed.
