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Gabe was finally discharged. He had endured a collapsed lung, two different strains of pneumonia, four bronchoscopies, and two intubations. After three frightening months in the hospital our 3-year-old boy was finally coming home. We should have been ecstatic. But honestly, we felt overwhelmed and terrified. Home health care wasn’t set up yet, and even though the nurse showed us how to clear his airway, we were unsure if we could do it safely.

Our insurance would not cover any additional days in the hospital. We both worked and our current daycare could not handle the medical needs that Gabe required. We were desperate and could not afford to take any further time off work.

Our first night home was one of the scariest of our lives. Within 12 hours of being discharged something did go wrong. His feeding tube came out and we found ourselves back in the emergency department.

I felt defeated. We wanted to provide Gabe with the best medical care possible. We just weren’t sure how to do that.

Both our boys are affected by a genetic disorder that leaves them without the ability to talk or walk. They have always received exceptional care at Children’s Hospital of Illinois, but the needs of children with complex medical conditions and their families don’t just end when they leave the hospital. We were unprepared for our new normal.

Our Community Supports Us

When you are the parent of a child with complicated health needs, life is different, but the love and happiness is the same. The daily tasks, the dependency, and the medical competency are challenging. Gabe requires in-home nursing care from an ICU level nurse.

I feel so fortunate that we live in a community with a children’s hospital that is dedicated to continuing our care. Children’s Hospital of Illinois’ plan to build an Almost Home Kids facility right here in Peoria will change lives. It is a bridge from the hospital to the home. The goal is to give families like mine the time, tools, and training necessary to make the transition from hospital to home successful.

For too many years, families like ours have struggled and not known where to turn. With your help this can change.

I know more than most what a blessing this facility will be. A parent’s new normal might be caring for a child with a feeding tube or a breathing tube. Their child might be dependent on complex medical equipment that their home isn’t prepared to support. Or home health care may need to be set up, but they aren’t sure which community and government resources may be available. Right now, they have nowhere to turn.

Together we can make a new reality.

This will not be another hospital. Almost Home Kids is different. It is special. This facility will be a real house, with real home décor hanging on the walls, a full-size kitchen, and even a wheelchair accessible garden and playground. Instead of scrubs and hospital gowns, everyone will dress in their own clothes.

These might sound like small things to you, but to a family that has spent three months in the ICU or who is leaving their child for the first time maybe ever, they mean the world.

We first discovered the Almost Home Kids facility in Naperville when we were looking for respite care for our boys. In addition to transitional care, they also offer short-term care—ranging from 24 hours up to two weeks.

Before Almost Home Kids, we weren’t sure what to do when we had a professional conference or a family wedding. Do we tell our 9-year-old daughter that we can’t join her cousins in Michigan for our annual lake trip? It often felt like we didn’t have an option.

As a mother, I was also positive that no one could take care of our boys like I could. But the truth is that Almost Home Kids can.

When we go there, they know our boys’ names. They also remember what they did the last time they were there. They remember it all. It may not be grandma and grandpa’s house, but it’s the closest thing to it.

Having a facility right here in central Illinois will provide this level of care. Families will have a choice and feel they aren’t alone.

As fantastic as the Naperville facility is, it is over two hours away. That creates a lot of problems for families. We can’t just load our kids, bags, and medical equipment in a car and drive. Every time we go, we pray we will not run into traffic. If we do, we have to pull over, unload Gabe and his medical equipment, find a place to hook them up, and then perform the medical care he needs.

It is even more difficult for families just out of the hospital. When you end months of worry, doubt and sleepless nights at the hospital, the last thing you want to do is send your child away where you can’t see them. Often families struggle through their new normal because the alternative doesn’t work. With a facility in Peoria, we can end that struggle.

I’m asking for your help.

We can’t complete this project without you. We need our entire community to make this happen. Every child, regardless of disability or medical condition, deserves to live a happy life at home. My boys and thousands of others need this facility.

Your gift today can make it happen.

You have the power to erase the fear and uncertainty parents of children with complicated health needs face when they leave the hospital. You can give them hope and confidence.

Bringing Almost Home Kids to Peoria will change countless lives, ours included. Please help Children’s Hospital of Illinois give families a place to turn.

Thank you for your support of Almost Home Kids. It makes a difference greater than you can imagine.

Sue Ruskusky

P.S. Right now a family is being discharged from Children’s Hospital of Illinois and they aren’t sure they can safely provide the right level of care for their child at home. Your donation today ensures they can.

530 NE Glen Oak Avenue · Peoria, Illinois 61637 · 877.574.5678
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