Infantile Spasms Part 2

Francie Khalaf by Francie Khalaf Additional Needs

Francie Khalaf

Francie Khalaf

I am a wife and mother of two children with cerebral palsy. I believe in making lemonade out of lemons

As we entered the hospital I went straight to the front desk.

This was my first time at this hospital and little did I know that this would become a home away from home.

“I need to be admitted. My son’s doctor sent over an order.”

We waited for a nurse to come get us and were brought into a room.

At this point I was getting nervous and Sawyer could feel it.

Let me preface what happens next with this…..we have only had a few bad experiences with nurses in the hundreds we have encountered.

We were brought into our room and the nurses began asking me a flurry of questions. “What does he eat? What are his meds? What kind of bed should we get him? Does he need a cover for the bed?”

I answered as best I could as they repositioned him to begin putting on the EEG probes for the second time that day.

We were stressed we were hungry and we were emotional.

Sawyer was very upset about all of the poking and prodding he was encountering.

He also wasn’t getting adequate sleep due to the spasms so he was sleep deprived.

My poor little man was screaming his head off while they put on the EEG probes and held him down for an IV.

I don’t remember exactly what I said while he was screaming but she said to Sawyer. “Your poor mom.” I know he was being difficult but I also know he was scared and stressed and barely over a year.

It felt like a punch to the gut after all we had been through.

My reply was “Well he barely survived multiple infections so we are just lucky he is here.”

Fast forward 48 hours and he had medicine under control and his EEG was looking better.

We had a good dose for him and we were heading into discharge.

Our neurologist took us into a consulting room and brought up all the scans for us to look at.

She explained that children with Sawyer’s level of brain injury rarely develop past 6 months in age.

They don’t ever speak, walk, or use the bathroom on his own and will need life long care.

We were floored, we had no idea that this was his prognosis.

In the hospital the doctors didn’t seem to want to tell us.

They skirted around it and I understand why but our neurologist was still shocked we were not prepared for this.

The one thing that Ryan and I have always been good about is not giving up and remaining positive.

I told the doctor that if this was the case then we would love him no matter what.

She knew that but wanted to make sure we understood the level of care that Sawyer would need in the future.

We moved on to discharge with medicine in hand and very strict instructions on medicine and a scheduled follow up with our neurologist.

Where we are now will be in my next blog.

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