Avyah’s Battle with Chiari
Donation protected
In November, at 7 months old Avyah started going through a series of respiratory infections. Her main symptoms were constant wheezing and trouble breathing. She could never fully recover from one infection before she’d have another infection being full blown.
In January, Avyah developed a new symptom. Everytime should would eat or drink she would cough and choke sometimes so hard she would vomit. It was immediately brought up to her pediatrician but was not a concern at that time.
At this point, she stopped even getting better in between different steroids and antibiotics.
In late January, Avyah started getting worse.
•high fever
•lethargic
•vomiting
•lost abilities
•troubles breathing
•refusing all food
We went to the ER 8 times in the next 2 weeks and each time were told something different and shoved back out the door with a “if she gets worse come back.”
So that is EXACTLY what we did!
Finally, we got a doctor who seen a very sick little girl that had lost 4lbs and decided she needed to be hospitalized. We were taken to St.Marys in Rochester, Minnesota. We were kept there for 5 days with only an X-ray done for testing.
Her refusing feedings were ruled out as “behavioral”.
By the time we got her to eat we were ready to go home.
About two weeks later we were ambulanced to St. Elizabeth’s ER In Wabasha, Minnesota for respitory distress. We stayed the weekend there and I witness the scariest thing of my life. Avyah turned blue and was gasping for air. That is when we decided we needed to put our foot down and get answers.
A few weeks go by and Avyah’s first specialist appointment comes up. She was to have a video swallow study done that was recommend by the aerodigestive clinic out of Rochester.
5 minutes into the study we were told we wouldn’t be going home due to Avyah aspirating on both solids and liquids.
A NG tube was dropped as soon as we arrived at St. Mary’s. Avyah started making strides. She was happy again, gaining weight, breathing better..
We went home and awaited the surgery of her g-tube placement. During that surgery they took her in for an MRI of her brain. That is how we discovered Chiari 1 Malformation.
Surgery scheduled for Friday May 29.
In January, Avyah developed a new symptom. Everytime should would eat or drink she would cough and choke sometimes so hard she would vomit. It was immediately brought up to her pediatrician but was not a concern at that time.
At this point, she stopped even getting better in between different steroids and antibiotics.
In late January, Avyah started getting worse.
•high fever
•lethargic
•vomiting
•lost abilities
•troubles breathing
•refusing all food
We went to the ER 8 times in the next 2 weeks and each time were told something different and shoved back out the door with a “if she gets worse come back.”
So that is EXACTLY what we did!
Finally, we got a doctor who seen a very sick little girl that had lost 4lbs and decided she needed to be hospitalized. We were taken to St.Marys in Rochester, Minnesota. We were kept there for 5 days with only an X-ray done for testing.
Her refusing feedings were ruled out as “behavioral”.
By the time we got her to eat we were ready to go home.
About two weeks later we were ambulanced to St. Elizabeth’s ER In Wabasha, Minnesota for respitory distress. We stayed the weekend there and I witness the scariest thing of my life. Avyah turned blue and was gasping for air. That is when we decided we needed to put our foot down and get answers.
A few weeks go by and Avyah’s first specialist appointment comes up. She was to have a video swallow study done that was recommend by the aerodigestive clinic out of Rochester.
5 minutes into the study we were told we wouldn’t be going home due to Avyah aspirating on both solids and liquids.
A NG tube was dropped as soon as we arrived at St. Mary’s. Avyah started making strides. She was happy again, gaining weight, breathing better..
We went home and awaited the surgery of her g-tube placement. During that surgery they took her in for an MRI of her brain. That is how we discovered Chiari 1 Malformation.
Surgery scheduled for Friday May 29.
Organizer and beneficiary
Morgyn Steinke
Organizer
Osseo, WI
Darla Smith
Beneficiary
