Our Medical Foster House is a Happy House

by Barb Aleman

picture of young boy

Daimen

I am a foster parent who specializes in children with complex medical needs, and often children receiving palliative or hospice care. In this article, I will be sharing about some of the children who have come through my home over the years.

Kayda

My first child, Kayda, came to me at the age of four. She had hydranencephaly (most areas of her cortex were gone and replaced with fluid) and came to me with a Do Not Resuscitate (DNR) order. She was often congested and had many trips to the hospital initially, but she started doing much better. Right from the beginning our house was a happy house, no matter her diagnosis and her health difficulties.

We travelled all over the place: Toronto, Niagara Falls, Winnipeg, California, and Disney Land. We also went to the interior of the province often to visit my grandmother. She went to school with one bad year and then several great years at a different school. She was sick a lot, though.

When you are a foster parent, you often don’t get to make the big medical decisions. For example, the social workers and doctors kept arguing over whether Kayda should be a full code, meaning she would be resuscitated if she stopped breathing or her heart stopped. After ages arguing about it, it was decided that she should be a full code. I overheard her pediatrician on the phone when the social worker told him about it. He was totally against it. I think he thought I was one of those parents who wanted her to be kept alive no matter how ill she was. She had several close calls and several times was near death, but I picked her up and held her and she seemed to get better.

By the time she was 11 we sort of knew things were changing for her. I realized a month or so after her birthday that she was dying. We were part of a children’s hospice program and they helped us through the changes. We celebrated her eleven-and-a-half birthday, as I knew she wouldn’t live until her twelfth. Even after we knew death was approaching, our house was happy but quiet, as she couldn’t stand noise.

Late one evening, eight days after she entered hospice, she just stopped breathing while I held her. While I was getting her ready for bed, I had an overwhelming urge to hold her. I can picture Kayda telling God she wasn’t going anywhere with him until her mom was holding her. It was quite awhile afterwards that I realized her breathing had changed. It was only after I went to adjust oxygen and approached her bed that I realized she was gone.

Trevor

Nine months after Kayda died, Trevor came to stay with me. He was nine and had Duchenne muscular dystrophy and a severe cognitive delay. He was still walking a little when he came. I used to put his wheelchair in the kitchen, and he’d walk from it or to it. One week I noticed he was having more trouble making the distance.

Each morning and evening he needed the wheelchair closer to his bed. On Monday night he could walk from his bed to the bathtub. Wednesday, he couldn’t. He tried to stand up and walk several times and he couldn’t. He sat down and cried. I told him that I’d make sure he got everywhere he wanted to go.

As he got older, he lost more and more of his abilities. He’d be depressed for a week or so when he lost a skill — sitting up, moving his arms, moving on the floor — but then would rally and adjust. I made the decision that no matter how hard things were for him, our house would be a happy house.

Despite all his problems, we went to Disney World three times, he attended school, and went to church and Sunday school. Trevor loved to play with beads and look at them. As he got older, he kept coming up with new ways to hold his beads. He even learned to say a few words that indicated he understood lots more than we thought he did.

With Trevor, there was almost no warning that he was running out of time. He started to sleep a lot and was in pain. I took him to the hospital and within an hour he was barely breathing and had to be put on a ventilator. I got the talk — you know you’re going to have to stop treatment — I said I knew that but we weren’t there yet. The doctor said we had to make decisions, as his heart was so weak it couldn’t last much longer. For Trevor we always knew that he wouldn’t tolerate being on the ventilator.

We had a lovely Christmas party for him in the ICU and then he was taken to the hospice and had the ventilator removed. I still hoped the doctor was wrong, but just one hour after the ventilator was removed, he was gone.

I was absolutely devastated by Trevor’s death. There had been no real warning. But as I went through all his pictures to put them online, I realized how full his life had been. I remember saying to myself, “Did this child ever stay home?” I had no regrets. He’d had a happy life no matter the difficulties.

McKenzie

Then came McKenzie, who was five and had Krabbe Disease. When Trevor died, I’d said I didn’t want to have any more children who were going to die. When I looked up info on the disorder, I saw that it was one of “those” conditions, and at five McKenzie had long outlived her life expectancy. But I knew I couldn’t leave her in an extended care facility just to save my feelings.

She had lots of issues, but was actually quite similar to Kayda. She hardly made a sound and didn’t appear to be aware of too much. But as I learned about Krabbe disease, I kept coming across references to the fact that intelligence wasn’t affected. One day we were at a meeting that McKenzie had slept through. One of the people asked her if she was tired. She closed her eyes. I just looked and said to the person to say it again. Again, she closed her eyes. Well, that was the opening of knowing McKenzie was aware of her surroundings.

She was so fragile, and I knew she was running out of time. But our house was a happy house no matter what. I did as much with her as her health would allow. She didn’t travel well, but we tried a couple of trips. She attended Sparks (first stage of Brownies) and showed how she could explore with her hands.

One day after she’d been away for a few days at the hospice where she spent time with her biological parents, she came home with a heart rate that was very high. It kept going up and I called 911. She died less than 24 hours later at the hospice. Her dad was with her, she smiled for the only time in her life, and was gone. Her death was different for me as I wasn’t a part of the family and wasn’t wanted.

Daimen

And, finally (for now) there is Daimen, who is six and has lived with me since he was 11 days old. I was very excited when I learned that he had the same condition Kayda had had. I’d done a lot of research and written several papers about hydranencephaly. I’d printed them off and took them to the hospital with me when I went to pick him up.

When I got there, the social worker showed me a document that said he was a DNR and that I wasn’t allowed to take him to the doctor or even get immunizations. I made it clear I didn’t accept that. They agreed that I didn’t have to follow it. I showed them information on hydranencephaly, which included a good picture of Kayda at the age of 11. One social worker started to cry. She said I was the first person who had said anything good about the condition.

Like all of my others, Daimen has many issues that are challenging. Almost a year ago Daimen’s intestine twisted, and by the time the doctor had opened him up, most of his small intestine had to be removed. He had a total of four abdominal surgeries, and after the last one it was found that he only has 35 cm small intestine left. Of course, this has had a huge impact on his and all of our lives. We really questioned what sort of life he’d have, and did he always have to be in the hospital.

One day I was talking to the complex care doctor and I asked her if he could get TPN at home. He was in the hospital for the better part of six months and he’s now been home for five months. Yes, he has complicated care issues, but he’s still a little boy and we’re muddling along with various issues.

Again, my decision is that this is a happy house. Our house will continue to be a happy house.

Author: Barb Aleman • Date: 9/18/2019

About the Author

Barb is a single mom. She’s been fostering children with complex medical needs for over 26 years. She wouldn’t want to do anything else. 

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