Raising Medically-Fragile Foster Children

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Mike, when he was much younger than today

It’s not for everyone, but it is very rewarding for those who have the patience and determination required. Here’s my experiences, including much of what you need to bear in mind if you’re considering doing so.

In September of 1999, we took in Foster children, two medically-fragile four year-old boys named Mike and John (all names herein have been changed to avoid violating HIPAA regulations). One had Fetal Alcohol Syndrome, and the other had Fetal Drug Syndrome. Interestingly enough, they had almost identical symptoms: seizure disorders, developmentally-disabled (DD), both had very limited ability to communicate, both were NPO (nothing by mouth, fed through a gastrointestinal tube), both breathed through tracheotomy tubes, and both required total care, from feeding to bathing to toileting. I was uneasy with they took up a great deal of our living space, and caring for them entailed a pretty steep learning curve, but they and the others we’ve cared for have made a huge difference in our lives.

First, a little background. My wife was an Licensed Practical Nurse (LPN), and she had been working with a home health agency where she met a Registered Nurse (RN) named Carrie who had herself been caring for Mike and John for a few years. The burden of caring for them, however, had been too much for Carrie and her family, and so she asked my wife if we would take them in. We did so, and it was a lot of work. We had to modify a room for them, ensure our house was in accordance with state regulations, and arrange for 24/7 care, since they could never be left alone. At any one time, there was always either an LPN or an RN with Mike and John, and this meant that unless my wife was the one on duty, there was always someone else in our house. Being a career sailor sleeping in a 200-man berthing, the lack of privacy didn’t bother me much, but it did affect my family in that we always had to be careful about what we said and did within earshot or sight of the nurse.

When Mike and John arrived, I could see right away that we were very fortunate, for both of them were truly good-natured kids. Mike is African-American, and John was a Native American of the Quinault Tribe. We knew very little of their birth families, and my wife told me that it was probably better that way. Both smiled very often and loved to feel skin-to-skin contact. The only problem was that neither of them understood the concept of self-control. Instead of reaching out to hold on to someone, they would hit with their open palms. We immediately realized that these really were analogous to “love taps”, their way of showing affection, and while we could verbally discourage the love taps, we could never physically stop them from doing so.

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John, who had the biggest smile I’ve ever seen

As for myself, I was about to retire from the Navy and had other career plans, but in addition to my wife being paid for her nursing hours, having Mike and John each entailed monetary compensation from the state. The compensation amount was considerable ($3,500/month per child), but it was a win-win situation since it cost the state much less to place Mike and John with us than for them to be in a health care facility. As it was, I added everything up and between the 24/7 nursing care, the feeding and equipment, and the doctor’s visits and the medication, it cost the state a quarter-million dollars each per year to care for Mike and John…and so I suddenly didn’t feel guilty anymore about the compensation we were getting. And as we were finding out, we earned every bit of that compensation, for with every house we moved to, and every vehicle we bought, the first consideration had to be for Mike and John: wheelchair access throughout (including room for the disabled-access school bus to pick them up), a suitably-large room with a properly-sized and -placed window, lots of room for storage for their equipment (which had to remain organized and inventoried), and so forth. What’s more, even though I’d had no formal medical training, the state allowed me to be taught how to suction and change their trach tubes, apply rectally-administered seizure medications, and change their g-tubes. Such tasks are normally only allowed to be performed by licensed or registered nurses, so I’ve taken a bit of pride in what I could do. That being said, I’ve also come to realize that I was very much the exception to the rule, that very few others with my total lack of nursing experience would be allowed to do so.

As time went on, we took in other medically-fragile Foster children, but due to the sheer degree of the burden presented, we were always limited to no more than three at a time. The state workers seemed to love us, but I never really understood why until we picked up Saul, a low-functioning autistic Thai child in a small town in the Olympic mountains. He was about fourteen years old (with a mental level of about eighteen months), was fed by g-tube, ambulatory, and the first time I saw him, he was inside what was for all intents a sizable dog pen surrounded by a chain-link fence. It was obvious that his Foster family at the time did so because he could take off walking at any time in any direction, but it still didn’t look right. Most memorable was his tendency to vocalize, for like any eighteen month-old toddler, he loved to squeal and scream…but he had the lungs of a very healthy teenager. We didn’t take Saul right away (mainly due to how I thought his vocalizations would affect our household), but the state workers approached us again a couple months later, and so we went to look at Saul again. He was with another family, but this time I saw why the state workers loved us. At this house, there was only one woman in charge of caring for him and two other ambulatory DD residents. The woman was married, but her husband worked outside and judging by her haggard look and the lack of cleanliness of Saul and the other two residents, I realized that she had little or no support in caring for the children, neither by the state nor by her husband, and she was burnt out by the burden. It was then that I really understood how important it was that when it came to Foster kids in general, and medically-fragile children in particular, it takes both parents. The dad can’t just go off to work and expect the wife to take care of everything. We took Saul in, and his breath was so bad that we had to drive with the windows down the whole way back to the house. We later found out that he had not been seen by a dentist in ten years; after the first dental appointment, his breath was like anyone else’s.

Most surprising of all when it came to Saul was how I bonded with him. To this day I can’t explain it, but even though he was a low-functioning autistic who could only communicate as a very young toddler could, I came to actually love him…and I hated the day I had to let him go four years later. He has since passed away, and I feel so guilty, for I’m sure that if I’d toughed it out, if I’d kept him with me, he’d still be alive today. That, then, is another lesson learned along the way: you never know which children you will or won’t bond with, and if you do bond with them, it will hurt when you have to let them go.

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Saul. To this day I love him and miss him so much.

Time went on and we had to let John go. He had become so heavy that he was becoming a danger to my wife’s health. That was another lesson that I learned: the Foster parents have to look out for their own physical and mental health first, for if they are not healthy, they cannot care for the children. In other words, big-hearted martyrs need not apply; one has to know when let them go for the good of everyone. John also had a habit of pulling his g-tube out and then showing it to us with a big smile on his face…and it was as a result of this habit that he died a few years later at Children’s Hospital.

A few months later, I learned one of the most important lessons when it comes to Foster care: there is no blame. We were called and asked to pick up a six month-old girl who had been dropped off by her mother, who said that she just couldn’t handle caring for her daughter anymore. I was greatly offended at this; after all, how could a mother not just ask for help instead of just leaving her infant daughter with the social worker, right? The little girl (we’ll call her Briana) had the most beautiful smile, one that I can picture even now. She had cerebral palsy, and was fed through something called a “j-tube”. Neither my wife nor I had ever heard of a j-tube, so we tried feeding her as we would our other Foster kids through their g-tubes, and Briana immediately began to throw up the formula. I looked it up on the internet, and a j-tube required a much slower feeding rate. The mother showed up at the social worker’s office the following Monday and asked to take Briana back, and did so. I was more than a bit angry and hurt (I was already bonding with the little girl). As time went on, we found out that the little girl had been born normal, but the mother’s boyfriend had shaken her and caused the cerebral palsy. Then about four years ago, the little girl (by then a teenager) passed away…and the boyfriend was charged with murder for what he had done to her as an infant. But the lesson for me was that I had not realized just how hard it had been for the young mom (who almost certainly had had little or no formal medical training). She had to be heartbroken and angry beyond words whenever she saw her daughter’s beautiful smile, at how her little girl’s whole future had been torn away from her by that boyfriend who had shaken her hard enough to nearly snap her neck. It was when I understood this that I came to understand why my wife was so very right when she said, “There is no blame.”

The most challenging medically-fragile Foster children we cared for were the ones who were mentally aware and easily able to communicate, especially one boy whose name was Damon. He was a teenager who had Spinal Muscular Atrophy (a cousin of sorts, I’m told, to Muscular Sclerosis). My wife had told me that in the nursing homes, the ones who had MS were sometimes the hardest to care for. Because they had their whole minds, but had so little strength or control over their bodies, since they couldn’t control their bodies, the only way they could feel in control of the world around them was to be controlling of the people they interacted with…and Damon was a very demanding kid. I would try to get everything I could to make him happy, I would cook the food he wanted to order, but nothing I could do was ever good enough for him. About six months later he convinced the social worker to let him stay with someone else…and none of us were sorry to let him go.

During all this time, we also raised our own two sons, and this turned out to be one of the best benefits of providing the Foster care for medically-fragile children. Not only was my wife a stay-at-home mom (which is a great benefit that is increasingly rare these days), but our sons also learned to be much more understanding of and patient with those with disabilities, and our oldest son also qualified as a caregiver to earn extra money. It’s at this point that I should point out that (as any nurse or caregiver can attest), one of the most memorable parts of caregiving is “suppository day”, the day when you have to administer the suppository and clean up the results…and over the years, I learned two major lessons when it came to poop:

(1) Every nurse or caregiver has a “poop story” (or several) where their patient or resident has painted the walls or eaten the poop or used it for modeling clay or…well, you get the idea. Mine was pretty minor in retrospect: it was Saul painting the wall and the mattress and himself. Note for all prospective authors out there: if you want to write a book, go interview a bunch of nurses and caregivers. You’ll laugh your a** off at what they’ll tell you, and you’ll have more than enough material for a good book in no time at all. Picture the title: “Pooped! Stories from the front lines of nursing and caregiving”. I’m not going to do that, so whoever out there wants to run with the idea, go for it!

(2) It sounds gross, but when changing a poopy diaper, breathe through your mouth. I thought my wife was nuts when she suggested it…but she was right (as she usually is about most things). I promise that after a year or so of changing poopy diapers, the poop won’t bother you much at all anymore. You’ll just smile when others show how “grossed out” they’d be at the prospect.

There’s one other “poop story” that I should relate. My wife’s from the Philippines, and when she was very young, she was told that if she dreamed of poop, then money was coming to her…and of course we told this to our sons as a way to get them to tolerate the every-second-day smell that pervaded part of the house. Well, one day my youngest son came home, opened the door to Saul’s room and saw that I was changing Saul’s poopy diaper. My son took a sniff and without missing a beat, said, “Mmm…smells like money!” He also took great pride in that nobody, but nobody could gross him out at school, thanks to the long years of “suppository day” at the house.

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John, with my youngest son

One more thing I should mention is that perhaps the single most challenging part of having medically-fragile Foster children had nothing to do with the children, but with the management of the nurses and caregivers who will be inside the house. As an LPN, my wife was often looked down upon by RN’s who worked with Mike and John and our other Foster children, and were often very offended when my wife had to teach or counsel them, and sometimes we had to fire them. We found out the hard way that we couldn’t automatically trust them with the medications either, since one decided to help himself with a bit of Mike’s phenobarbital (a barbiturate) on the side. There were times when they called in and we had to unexpectedly take their shifts, and there was often sniping and backbiting and gossip among the nurses, and this did have an effect upon our family life. We responded by taking measures to ensure our family’s privacy was respected.

And that brings me to today. Mike came to us at age four, and he’s now twenty-three years old and laying down on his bed about four feet away from me as I type this. Mike’s an essential part of the family, of course, and we’re effectively the only family he’s ever known. He’s aged out of the Foster system, and so I’m no longer a Foster dad but am now “just” his caregiver, and as such I’m legally disallowed from doing much that I was allowed to do as a Foster dad (such as trach and g-tube changes). And I strictly follow the law and, when Mike needs that level of care, I’m very careful to not exceed my legal boundaries by doing what I’ve done for him for so many years as his Foster dad. At least that’s my story, and I’m sticking to it. So there.

The lessons for any prospective parent of medically-fragile Foster kids, then, are that you need to think long and hard before going down this road. It’s very rewarding for you and your spouse and children, but only if they are tolerant and broad-minded and supportive enough to share in such a burden (your spouse must be “all in” on helping out, too). You wll all need to be able to put up with the smell, with the noise, with the lack of privacy, with the personnel issues of the nurses and the caregivers, with the demands of the state workers, and with the limitations that having such Foster kids will place on your plans as a family. Most states will probably require that at least one of the parents be either an LPN or RN.

If you feel you can meet all these challenges, then I heartily encourage you to consider being a Foster parent of medically-fragile children. It’s hard enough to be a Foster child, but those who are medically-fragile have it even harder. Don’t fool yourself into thinking it will be easy (it’s certainly not!) but it’s well worth it if you can do it.

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