"I've made some calls, you need to go straight to the ER at Wolfson's to be admitted. Do you know where that is? You need to go immediately."
"Micah Hall? Ok no triage, straight back."
"He could go septic and need to be intubated."
"We don't have time to figure this out Mom, we have to pull out the big guns."
"This is advancing so rapidly just since he's been here, he has to go to ICU."
"You have to know we are risking kidney failure."
"it is either Stevens-Johnson's syndrome or Staph scalded skin syndrome, both present similarly, but we have to determine which it is because they are treated very differently."
"(to some students, not us) You see, it's called this because that's what it looks like, it looks like a bucket of scalding hot water was thrown on him."
And pause.
That is what he looks like. He's unrecognizable. When I returned to our room from the bathroom in ICU I looked in his room and kept walking. As I'm typing this, his face is still red and peeling, as is the rest of him, but he looks like Micah again. The swelling is gone and the blistering has stopped. In some ways this week feels like one long day. In other ways it feels like months since I was at work or out of this hospital.
I knew every parent would feel helpless in this situation. I now know helpless doesn't begin to describe it. The only things I was capable of were to hug him, touch him, rock him, or simply hold his hand. But any of that caused him sheer agony. I just sat beside his bed gowned up in my isolation gear and thought about how much I didn't want him to feel isolated.
At last count, Micah was seen by nine different specialties in the first 12 hours of his admission. (his hospital bill should be crazy to sort through) Everyone had their own opinion about which of the two diagnosis Micah had. My brother told us to insist on a dermatology consult. We didn't have to insist, they had already called her. She couldn't come until evening, but she would see him. Uncle DJ said, "this is the only time you need a dermatologist urgently, she needs to get there now, it's her time to shine". When she arrived, earlier then promised, she looked over my sweet boy and said, " look I am here cause there are a lot of big dogs arguing over what is wrong with your son." She points to the nurses station and I see two of Micah's doctors standing there watching us. "So they called me in to settle the argument." She went on to explain the very small differences in the two disorders. She did a biopsy for confirmation, but left 99% positive of her diagnosis. Staph Scalded Skin Syndrome.
Once Micah started getting four different antibiotics and countless people praying for him, his condition made rapid improvements. One of the best things about modern technology is within minutes, people all over the world can be praying for a need. We have so much love and support from everyone here and our faraway family and friends.
The scenario could have been so different. If our pediatrician had not sent us to the hospital when he did, Micah could have died. It feels very surreal to even type that sentence. In less than 24 hours he goes from a rashy looking sunburn to the ICU. I've said before that because of my job, I live with a heightened sense of awareness that no one is guaranteed tomorrow. I live my life often reflecting that thought, keeping it in mind for myself and those around me. However, I learned this week, that I don't think that about my children. It is never on my radar that they could be gone in a moment. I still feel guilty that I got frustrated with him Tuesday night for not wanting to get out of his oatmeal bath. It was bedtime and I wanted him to sleep. In hindsight, I now know his skin was scalding, and I was demanding him out of the water. I know I didn't know in the moment how sick he was, but I truly think I will feel guilt over that moment forever.
I sat at his bedside Wednesday afternoon, trying to think about the last time I held him, pain free. I decided it was Monday after his lab work. Blissfully unaware of my future desperation to simply hold him, I carried him through the parking garage looking at all the cool cars.
And now, here I type. In the hospital beside my sleeping miracle. My God went before us and took care of the details boy. My Micah Man who has charmed the doctors, nurses, and all the staff with his personality. My rare little boy who went out of his way to prove his rarity by getting a syndrome that some pediatricians don't witness ever.
I know he's rare, I just hope he doesn't feel the need to prove that to us again. One scare in this life is enough.
I've decided God truly uses music to console me during stress. Throughout the hospital stay these same few lines to a song ran through my head. Each time Micah was in pain or someone was having to hurt him to accomplish a test, these lines danced through my brain again. Oddly enough, I don't know the song well and had to google it.
So the above scenario went something like this:
"I've made some calls, you need to go straight to the ER at Wolfsons to be admitted. Do you know where that is? You need to go immediately."
-This is where the healing begins
"Micah Hall? Ok no triage, straight back."
-This is where the healing starts
"He could go septic and need to be intubated."
-When you come to where your broken within
"We don't have time to figure this out ,Mom, we have to pull out the big guns."
-This is where the healing begins
"this is advancing so rapidly just since he's been here, he has to go ICU"
-This is where the healing starts
"You have to know we are risking kidney failure."
-When you come to where your broken within
"it is either Stevens-Johnson's syndrome or Staph scalded skin syndrome, both present similarly, but we have to determine which it is because they are treated very differently."
-This is where the healing begins
"(to some students, not us) You see, it's called this because thats what it looks like, it looks like a bucket of scalding hot water was thrown on him"
-This is where the healing starts
We journeyed through this for reasons unknown. But we absolutely did not journey it alone. God showed up like He always does and reminded us that He is God. And all of you, loved, prayed, supported us.
With an eternally grateful heart, seeing God all over my little boy, thank you for your prayers.
His health is a miracle.
So is ours.
"So let it fall down
There's freedom waiting in the sound
When you let your walls fall to the ground
We're here now
We're here now, oh
This is where the healing begins, oh
This is where the healing starts
When you come to where you're broken within
The light meets the dark
The light meets the dark"
`Tenth Avenue North
