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The Day it All Began (A Memoir of SCIDS Part 1)

Updated: Sep 22, 2020

"Don't look at the monitor Amber! You should not be looking at it!" my friend tells me, as I sit with my baby in the trauma room of the ER, she's hooked up to the monitors."What? How bad is it?" I ask desperately, feeling my heart sink to the floor, and dread filling my mind. I looked at the screen, 68% oxygen saturation. Normal is 100%. We were WAY below normal.

She had a cough for 2 weeks. An ear infection before that, which needed two courses of antibiotics to clear. But she hadn't had a fever, so I thought it was just a cold. I had thought about bringing her to get checked out, but it just hadn't happened yet. Then one day I looked at her and she was breathing really fast. I had been so busy,  hadn't taken as much time just to look at her. Then she was tired, not playing, just resting, so I knew something was up, which brought us to the ER.

They slapped oxygen on her face, which helped her oxygen levels come up a bit. Blood tests, chest X-ray, an IV for antibiotics, and it all happened so quickly. How could it have been this bad without me noticing sooner?! I was so frustrated with myself, (and would continue to feel that way for days.) The doc told me she had pneumonia in both lungs and that, given her breathing so fast and low oxygen levels, she would need the extra support from the hospital in the city. My heart sinks again, because this means it's not just a simple pneumonia. I had to try and find Brent, he was upstairs visiting his dad, who was in hospital recovering from a heart attack the week before. I call his dad's room number and ask him to come down without the kids for a minute. He comes in, surprised to find us in the trauma room and even more so to see that she already has oxygen, and an IV. We sort out the plan for the next hour, he'll bring the kids home, pick up some things and by then Samara & I will likely be on our way in the ambulance to the city. Sigh. Our minds filling with so many silent prayers.

The trip in to the city went fine, accompanied by a doctor and a nurse. Her oxygen levels stayed up and she was happy. We entered Children's Hospital Emergency, and they brought us to our room to wait. Eventually a nurse came by and changed her oxygen to a mask, then Samara began fussing and crying, which made her oxygen saturation go down again. Alarm bells now ringing throughout the ER and 10 people come running from all directions, seriously they were running! Seems she had now gotten their attention. We went to repeat her chest X-ray and came back. The doc seemed puzzled, he told us that he saw some fluid build up along the bottom and some air on the top, he thought they may need to drain the fluid, but he wanted to repeat the X-ray again. Brent takes her to X-ray and I stay back and I just pray “  O Lord, please no fluid and no air, no fluid no air…" That's what happens when the pain and stress are so great, you just whisper prayers over and over again. The doctor came back and by the grace of God he said, "doesn't look like there's any fluid or air" oh yes! Thank you Jesus! He tells us that she might be able just to go up to the ward, but the ICU doctor needs to come see her first.

The ICU resident comes down to take a look at Samara, then calls up to her attending and they agree Samara could use the extra breathing support of CPAP, a pressure mask. I throw out a huge sigh...up to ICU. But in my heart I was so glad, at least she didn't need to be intubated with a breathing tube. The doctors, nurses and respiratory therapists up in ICU were ready for us. It was 2am by this point and as we walk up, I notice how quiet it is up in the ICU, and I remember that most of the kiddos here are on ventilators. They set up the pressure mask on my little girl, they so caringly console samara as she fusses with the mask being put on, I can see right away that these people are great at their jobs and I am reassured and so grateful that God has given us these staff. They put on more monitors to watch her heart rate, and her oxygen levels. We get settled in...weary and spent.



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