Having Children’s Hospital in Fox Valley helps family balance life

February 1 is the 10th anniversary of Children’s Hospital of Wisconsin-Fox Valley. I would like to share our experience and let others know what a tremendous impact having the hospital close to our home has meant to us.

My son, Griffin, was born in 2003 with a rare brain abnormality called Lissencephaly (Miller-Dieker syndrome). We knew of his condition while I was pregnant, and though somewhat prepared, had no idea what was to come after his birth. We had been told he may not survive birth and at best live to be 2 years old. Less than one day after we brought him home, we were sent to Children’s Hospital-Fox Valley due to jaundice and feeding difficulties, which led to breathing issues. Having two other small children at home made being away difficult, but it was very manageable with the hospital only two miles from our house.

The staff made us feel so welcome and confident in the ability to care for a special needs newborn. It was decided rather quickly that Griffin would need to have a permanent feeding tube placed. Dr. Georgen, a surgeon from Theda Clark Medical Center, gave Griffin what he truly needed to survive at this point. The procedure seemed somewhat bizarre to us at the time, but a nurse had a son with a feeding tube, and she was very helpful in explaining what this would mean for us on a daily basis. Little did we know that the staff at Children’s Hospital-Fox Valley would become such a big part of our lives.

Griffin suffered from numerous respiratory infections and pneumonias and was hospitalized over and over again. He also started having seizures when he was 6 or 7 months old. At one point, we needed to begin injecting him with steroid called ACTH. Children’s Hospital-Fox Valley had never done this treatment before. I asked if they would be willing to have the treatment started in the Fox Valley with the guidance of the Milwaukee neurologist, and they agreed. They taught me how to give the injections and I was able to take Griffin home within a few days. In addition to providing wonderful care to my son, so many of the nurses have truly become friends.

Thankfully, Griffin has been fairly healthy the past couple of years and he hasn’t been admitted to Children’s Hospital-Fox Valley lately. A few times we have been in the emergency room for respiratory issues, where he has been seen by a hospitalist from Children’s Hospital-Fox Valley. Because we have built a relationship with these doctors through the years, we usually have been able to go home under their guidance with the understanding we will come back if the situation gets worse and I don’t feel comfortable with his care at home.

I am proud to have this great facility in our community. It is never easy when you have a sick child and need to leave the routine of your life. With Children’s Hospital-Fox Valley just minutes from my home, I have been able to balance the needs of my son and still keep some normalcy for my other children.

~ Connie M. Niemuth, mother of Children’s Hospital-Fox Valley patient, guest blogger

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