(Sorry for the delay…my host has been really cruddy the past couple of days and posting this second part has been difficult because it has been SO SLOW.)
So after two months of barky coughing, we finally got Angel into the pulmonologist. She did a thorough exam, listened to our story and ordered x-rays and a bronchoscopy.Â
The following Friday we reported to the PICU at 5:00AM. Angel was prepped for her ‘minor surgery’ and her nose was sprayed with a numbing agent. We were then shooed from the room and into the PICU waiting room where families slept and silence reigned.Â
Hushed undertones of inane conversation crossed the table between us, our hands clenched together belying our internal fears. The lights started flickering on, the sequestered families started waking to decide who would go steal a shower first.
Still we sat quiet, our forced conversation disappeared as we watched the faces that coule be ours depending on what happened face a new day. The strained lines, the forced normality of conversation that had been ours.
The nurse arrived finally with a smile and told us we could go back and see her – that she was awake and feeling ornery. We leapt to our feets and rushed back to the room, scooping our precious Angel into our arms and holding her close and tight.Â
The pulmonologist had her wonderfully calm and warm smile, letting us hold her for a few minutes before she started in on the results.
She showed us images from the camera and told us that Angel’s Adenoids, Aretnoids and larynx were all swollen. Then she showed us this barriers of mucous that lined the path to her lungs. She said that this could mean many things, including Cystic Fibrosis – but she believed it was still the mucous of baby asthma.
She was so reassuring as she sent us off with a schedule card for blood tests and “just as a precaution” a sweat test.Â
We went into the Outpatient Center of the hospital, and the blood work was horrifyingly terrible as it always is when they stick needles into a child’s arm…and then it was time for the sweat test. The tech was so wonderfully sweet and kind as she cleaned our tiny babie’s arms and put on the medicine – followed closely by two electrodes.
We sat for five minutes as the machine buzzed, sending waves of electricity through Angel’s skinny little arm. Then her arm was wrapped up in layers of wrap and we were sent out to play with a little timer set for 20 minutes. By the time we got back to the room, our nerves were raw. Even though we’d been assured that the pulm truly thought it was baby asthma…the thought of the words ‘Cystic Fibrosis’ sent chills down our spine.
The super-nice tech frowned as she peeled off the wrap to reveal the litmus paper on the arm, “Oh my, this little one doesn’t sweat much, does she?” She pondered whether there would be enough sweat to even test…and carried it out of the room. We sat silently, looking up in surprise when she returned and handed us a call-back card. Apparently we had to wait until 4:30 for the results.
I headed home, and Archie to work. Our nerves were wrapped up tight, but we suffered silently until 4:30. I called the number with shaky hands, a deep seated dread filling me. I punched all the numbers and the computers automated voice said the words I’d been longing to hear “Your test results are normal.”Â
I heard nothing else, hanging up and calling Archie in relief. We cheered our escape from such a fate, cried happy tears and went back to our days with lots of planned hugs for Angel. We’d lived through our short journey to answers…our relief was immense….
And short lived.
An hour later Archie had come by and was playing with the kids – and the phone rang. I was surprised to hear the pulmonologist on the other end of the line, “I know the automated system told you to call in, but I didn’t want you to have to wait.”
My heart stopped beating for a full ten seconds as I stammered, “Uh…no…the…the computer said the results were fine.”
“I’m so sorry, but it was wrong. We’ll have to look into why it told you that.”
I met Archie’s eyes across the room, I knew tears were starting to fall, and that I wasn’t breathing.
“I wanted to call you personally because I didn’t want you to panic.”
Too late.
“But the test results showed elevated sweat chloride levels…” The rest of her comments were a blur until she said, “Cystic Fibrosis.”
What had been a short journey into answers was about to get a lot longer – and impossibly more frightening.
My heart trembled and broke reading this. You captured your fears and emotion so vividly here. I cannot even imagine. I am so sorry the automated system gave you false results. That is just horrid.