PICU Journey Part I

Has there been a season in your life where you wondered what the heck God is doing? How could God possibly allow His child to endure the extreme pain and heartache that you are feeling? This chapter of our story definitely had me and Chase asking some of those questions.

Cash was home two weeks… 19 days to be exact. We were adjusting to life and enjoying every moment of it. Don’t get me wrong, there were times where I felt completely overwhelmed and unsure of my ability to raise two children, but having both of our kiddos home felt so great.

Watching Cash and Charlee together day and night melted my heart. Cash lights up when he is with Charlee. His eyes sparkle and he totally doesn’t mind that she is in his face, yanking his arms around, and squishing his chubby little cheeks, in fact, he thinks it’s hilarious. Charlee assumed the big sister role just as I imagined. She is very protective of Cash and will snap at you in a heartbeat if you aren’t doing what she thinks you should be doing with her “baby brudder”. She has no problem telling you that you are too close to his face and need to wash your hands! Watching them together is the definition of happiness.

Just as we are settling into a routine and getting 9-hour stretches of sleep from Cash, we found ourselves needing to be admitted to the hospital again. Cash had been making a funny sound occasionally on his breaths in (inspiratory stridor). Initially, it didn’t alarm us and it didn’t alarm our pediatrician because it was intermittent and he appeared comfortable. However, when we went for a routine follow-up with our neurosurgeon, the minute he walked into our room, the sound concerned him. Our neurosurgeon had a gut feeling that this noise was more than something Cash would grow out of. We discussed his concerns and left with a referral to ENT.

The neurosurgeon wanted us to see ENT to rule out symptomatic Chiari malformation. Most children with myelomeningocele spina bifida have Chiari II malformation. It was no surprise to us that Cash had it as well, but we didn’t know that Chiari would become our worst nightmare.

Over the next couple of days, Cash began working harder to breathe. It got to the point where his feedings (his best activity) became challenging. Towards the end of his feeds, Cash was choking and gasping for breaths between gulps. Chase and I worked hard to find ways to feed him more comfortably but ultimately it got to a point where we realized something wasn’t right. I called the neurosurgeon and he suggested heading to the ER.

Upon arriving in the ER, we were rushed to a room. The triage nurses heard Cash’s stridor and completely panicked. He was immediately hooked up to high-flow oxygen and admitted to the PICU. Little did I know, our wait in the ER would be the last time I would be able to nurse my sweet boy, forever.

Once in the PICU, Cash went NPO. Meaning, until we discovered more of why his breathing was compromised, he could take nothing by mouth. We had ENT come visit Cash at the bedside where he scoped his upper airway. It was then that Cash was diagnosed with bilateral vocal cord paralysis. The stridor we were hearing was due to the vocal cords not moving when Cash took a breath in. Upon further testing and investigating, it was determined that the Chiari malformation was compressing Cash’s brain stem and causing the vocal cord paralysis. The vocal cord paralysis was compromising his ability to swallow and breathe.

This was devastating news.

After lots of tears and prayers, Chase and I mustered up the strength to move forward with the discussion of Chiari treatment. Cash had a decompression surgery the day after he turned 2 months old. Postoperatively, the plan was to slowly wake him up so he could heal, then we would assess his airway and swallowing. We had to make sure that Cash wasn’t aspirating when he swallowed. 

Several days later, Cash was on the mend and had his swallow study in the hospital. Unfortunately, he silently aspirated everything he swallowed, even the thickened fluids. I cried the entire swallow study as I could see this happening on the screen above the doctor. Completely and utterly devastated that Cash was having difficulty with his best activity, we met with the doctors and came up with a plan. It was then we proceeded with inserting a g-button for Cash to feed through his belly until he healed enough to protect his airway.

The g-button was placed and Cash’s stridor seemed to be improving! We stayed at the hospital for an additional week to learn how to use his new accessory and we were able to return home.

I wish it ended there…

PICU Journey Part II coming soon!

-Carly