22 days

22 days / 21 nights we spent at Primary Children’s Hospital of Salt Lake City.

The best hospital for hundreds and hundreds of miles.

13 different rooms

At least 4 Dozen nurses, techs, and students

4 pediatric critical care specialists

14 Residents and Fellows in ICU and on the infant med-surg unit.

A dozen respiratory therapists

3 ENTs

3 pulmonologist

11 radiologists

One amazing pediatric General Thoracic surgeon.

9 nights in the Pediatric ICU

1 short term discharge

3 pnumothorasis

4 chest tubes

1 surgical drain/chest tube

2 bedside bronchoscopys

1 rigid bronchoscopy in the OR

8 successful IVs with lots of failed attempts

1 arterial line

1 CT scan

5 days Medically induced Coma

6 days intubated

2 code blues

3 bad “cardiac events”

1 bedside nasal scope

20+ medications

2 dozen X-rays

1 swallow study


Dozens of blood tests

1 CF test

1 thoracotomy and right middle lobectomy

1 miss-diagnosis: reactive airway disease.

5 diagnosis: Congenial lobar emphysema, Laryngomalacia, airway malacia, GERD, and Aspirations

2 NJ tubes

4 NG tubes

One fantastic speech therapist who was with us from the beginning.

20 days of supplimental oxygen

One now happy and healthy baby girl who is so lucky to be alive ❤️

And probably a lot more things that I don’t remember.

Looking back through this whole experience, what I cannot quantify is the blessings, tender mercies, and absolute miracles, from hundreds of prayers on her behalf.

We left the hospital successfully last night. She and I are staying with a friend right down the street for a few days until the kids’ fevers are gone.



Things seemed to be ok. She was fussy but she’s been fussy for a while I felt that she was just so tired of all the stuff and we were all just ready to go home. I grilled the staff with questions and what ifs. They were confident it was ok to go home. Since she met all their requirements we were discharged. I put her in her carseat and we headed downstairs to pick up her prescriptions. I thought maybe she was just tired and cranky and would fall asleep soon. She didn’t fall asleep.

I thought maybe in the car she would calm down. So we got her in and headed down the street. She was still crying. I told Matt that maybe I should just ride the train home because then I could hold her the whole time. I had been holding her since 6:30 this morning. We pulled over just down the street in a near by parking lot. I took her out to try and calm her down. I noticed that she was showing more and more signs of respiratory distress. She had nostril flares, retracting, a strange click like sound while gasping for air and these crazy panicked eyes. I told Matt that something wasn’t right, she was really struggling to breathe. I was convinced that the lorengomalacia was blocking her airway. I took her out of her carseat hoping to  She was already on a portable oxygen tank so I decided to turn it up. From .12 to .5 liters.

We pulled right back up to the emergency department and I rushed in with her and quickly explained the situation to admitting nurses. Georgia’s oxygen rate would not go up until she was at 3 liters of oxygen flow. We went through and they put us in an ER room to wait while they got a hold of the team that discharged her.

She was still inconsolable. But not gasping for air anymore. After much effort I got her to sleep on my chest. Matt and I sat there in the calm trying to figure out what in the world could be wrong. I thought maybe it was the carseat making the GERD worse. Within an hour we were being moved to a new room in the same unit we were just discharged from. Assuming we were just going to be observed overnight Matt went to the Ronald McDonald room to do laundry for me.

I warned them that she was a screamer and asked to get the paperwork side of things done first so we do not disturb her until it was necessary. This was the first good sleep she had done since 6:30 am. We hadn’t even gotten through the paperwork when she stirred and woke up. I did my best to calm her but things went crazy.

The nurse paged the resident.

The resident came and looked her over and asked me a bunch of questions.

She held the black pager to her mouth and said rapid response IMSU Room 4035.

Grabbed my phone text Matt.

Come back now.


She’s bad.

I’m fumbling my words. Trying to keep it together.

“They said she was fine…”

“They said we were ok to go home.”

“But then she couldn’t breathe… She’s PANICKING, and scared to death.”

People started to gather. I was told to put her on bed, so they could get a better look at her.

Once I let her go I was able to let go for a minute, I cried, some sweet nurse gave me a hug I took some deep breaths and put my game face back on.

It all happened so fast yet time was standing still. A gentleman came to my side and started to talk me through what was about to happen.

To be continued…