Conversations with Kaitlyn anytime are among the sweetest experiences in a given day. And with that, conversations with Kaitlyn at 2am are among the most dynamic. Her clear perspective is so refreshingly sweet, honest, brilliant, and loving. She leaves me speechless. In all this, I’m supposed to be the adult; the responsible one who teaches my children daily, cares for them, provides for them, guides them, and loves them. I’ve said this before about parenting these two- the lessons and impact in listening are far more educational than the ones I’ve ever spoken.
I’ve written a lot since June- but I’ve stumbled with pressing the ‘send’ button. Why is that little button so intimidating? It’s that tricky balance I’m trying for again/still- in making sure I appreciate each day- and also in fighting for better days ahead. I’ve written about home nursing care before, but I’ve also struggled with how much to write here. By being silent, I worry that can be an implied acceptance to a home care system that isn’t doing what it says it is. That’s not okay. I’ve researched, written letters to state officials, emailed candidates for state office positions, and more. It’s not enough. I’ve talked to many parents, family members, nurses, Kaitlyn’s providers, other care-takers, many friends, and family. My advocacy for Kaitlyn isn’t new; however, my validation of it keeps growing. And still, this isn’t enough. The lack of accountability in home care is more than just heartbreaking; it’s completely infuriating. Families deserve better. Kids who need home nursing care deserve better. Our communities deserve better.
Kaitlyn: “People shouldn’t waste their life with pride.”
Why should this matter to you? At any point, if your child needs long term care- these issues would affect you. I didn’t plan for this. I didn’t think this was the life I would be in with my kids. I did not plan at all to be in this process- or to even know about it. I can’t sit and feel how sad and helpless this is sometimes because that’s more consuming than I have time for. If your elderly loved ones need home care, this affects you too. This affects all of us.
Who is responsible for home nursing care? This is part of the problem. Kaitlyn’s insurance covers home care financially- but they don’t oversee it. The accountability in home care is so vague. Companies can make up their own training protocols, which in actuality are incredibly lacking. There is no physician oversight to their training at all. Additionally, there is no process in place that lets parents or caregivers, or even patients themselves know what hours these companies are charging.
Entitlement. That concept is a huge part of the problem. Companies are more entitled than they are dependable or accountable. Health care for children should not be about entitlement or money. Politicians aren’t rushing to fix this, or even address this. Yet. I’m hanging on to hope with the ‘yet’ in that. This isn’t an attractive issue for some reason. Clearly there isn’t a lot of money in home care- and fixing it would take a lot of money. Are patients entitled to home care? Is that question part of what holds us back from making this system better? As a mother, I have asked this question countless times. Do we deserve home care? How do I justify needing a break? And if we do have home care- do I accept that it’s not going to be accountable because the system is overextended? Just because there is less money in home care does not make the patient less important. Hospital care is incredibly accountable, skilled, and the system in place is much more clear. However, being in a hospital is not the quality of life we strive for. Better home care all around would equate to less hospitalizations for many. Protocols are in place to prevent infections, provide for the safest route in care, and for the best health possible for the patient. So if protocols aren’t being followed, or updated; the risk is great.
I am not putting the nursing company’s name in this that we derived our experience from. This isn’t about them. This is about needing a better system as a whole. In talking with other families, this isn’t exclusive to just this company. This is a county-wide, state-wide, and national problem. This is our experience- and it’s been heartbreakingly validated through other’s stories as well.
In August, our one home nurse resigned. She gained employment with a hospital. They gained an incredible nurse. We were selfishly bummed because we miss her of course; but we are incredibly happy for her.
Blame doesn’t help anyone. What an incredible thing it would be if we all took responsibility for our own words and actions. That concept is thoroughly missing with the management in home care, which isn’t fair to the nurses who do incredible work and who are humble, skilled, compassionate, and thorough. Not all home nurses are inexperienced. The process in which they gain that experience is varied. The home nursing company will tell you that they ‘train’ their nurses to gain that experience yet sadly, that is overwhelmingly untrue.
Kai: “I think the government has a lot of policies but they
need more voices.”
In advocating for Kaitlyn, one politician did email me back
and agreed to meet with me. I completely appreciated his time. He listened reflectively,
which made me feel heard. He didn’t make any giant promises, which I actually
respect- because this isn’t something one person can fix. In the days leading
up to that meeting, conversations with Kaitlyn and Kai were the most
motivating. Kai wants to talk directly to the president & Kaitlyn thinks we
should talk to her doctor more- that he can fix anything. Kaitlyn wrote a letter and also drew a flower
for my meeting. In it she wrote, “my mommy is very special” and, “I just hope
you listen to what she has to say”. She told everyone we saw about it, and was
so excited. The first thing Kai said when we picked him up from school that day
was, “did your meeting go good? Did he say he would talk right to the
president?” The love and support from Kaitlyn & Kai is intangible, yet is
what gives me the strength to keep speaking up. I hope for more meetings in the
future. I look forward to productive conversations.
Late August, I met with a social worker from Kaiser, Kaitlyn’s caseworker from the regional center, the owner of the nursing agency, two new nursing supervisors and their nursing scheduler. I had no nursing care- so I wheeled Kaitlyn with me. She had been up the entire night before. She knew I was going to that meeting, and she whispered to me in the morning, “Mama. I’m so proud of you. I’ll be right next to you and we can stand up for what’s right.” Stand up for what’s right. That statement in her sweet voice stayed in my mind and gave me strength through the entire day, and in all the days following really. The car ride, and exhaustion finally taking hold- Kaitlyn slept through that meeting. I could hear the humming of her TPN pump, which was a constant reminder of why she deserves accountable, compassionate, skilled, and adequate care. During the meeting, the owner seemed to listen. She offered to have 8 hours of training for the next nurse. This was huge and had never happened before; but the process was still vague. The nursing supervisor said she would provide the training. Not any other time had a nursing supervisor been a part of any home training for Kaitlyn, so that seemed hopeful. Although notable; before that meeting, she had met Kaitlyn twice. Twice. Conflict usually makes me itchy. It’s so uncomfortable it feels like my body revolts against itself and I want to just curl up and cry. I would make a terrible politician. But that day, I didn’t curl up or cry. I kept speaking. I spoke on Kaitlyn’s behalf and I asked the questions I’ve been asking for the past 3 years of this company. I appreciated the input from the social worker and the regional center worker. I really appreciated their time as well. They didn’t have to do that. There’s no system in place that holds nursing care companies accountable to them either. The next week, I received this letter; which is dated one day after we met. The company decided to stop any future care because of a “lack of trust” that she felt I would never give them. So none of that extra training was really true. The result of advocating for training, asking about the process with new nurses, and wanting to meet with nurses before they care for Kaitlyn is that we were ‘let go’. And this is in knowing that they were the only current company with home nursing care for pediatrics in our county. How is that okay? It’s not.
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This letter made me feel manipulated and so small initially. I wanted to defend myself with what she wrote because it’s not at all representative of me, or what was said, or even what she had said. And then, I let that go. I felt empowered to advocate more. This letter is a great illustration of why we do need more accountability in home nursing care.
Kaitlyn is on multiple medications, spread out into 14 doses a day. She’s on TPN for 20 hours a day and formula through a jejunal tube for 18 hours a day. Accessing her central line has to be done so with experience and a clear understanding of protocols for her safety. It doesn’t just make me feel better to know that anyone accessing her line knows what they’re doing, it’s genuinely so important that her life could depend on it. Accessing her tube requires training as well, although thankfully less serious as her line. Her formula has to be mixed right, with the right ratio and time; or the tube clogs and that causes the machine to not function properly. When that happens, she’s not getting the calories she needs. From my perspective, this requires training and accountable care.
Let’s say I had $100 and I put it in the bank. I would know how much is there immediately. I can look online right away and monthly; the bank provides statements with any deposit and withdrawal. Relative to healthcare, when Kaitlyn has been transported by ambulance (a private company), they send a statement which lists what they did, how much they’re charging, and what the insurance is being billed, along with what they paid. There are systems in place for accountability. Yet with home care- there are no such statements or verification of hours allotted vs. hours charged. This could all be going super smoothly behind the scenes but without any accountability seen or quantified, there’s no way to know. Accountability keeps us on the same page. With Kai- he’s incredibly honest and hard working. I still check his school agenda and look over his homework. I sign his reading note, as his teacher has a system in place. It’s not to insult the kids or to make them feel dishonest. Accountability is a positive thing for everyone. From my experience, when the accountability is clear, I see better quality all around.
In home care- I see a need for fiscal accountability & training accountability. While I realize it’s not illegal to be rude, being treated respectfully would have been a great thing. When I spoke to the owner during the meeting, she spoke to the valid frustrations with Medi-Cal not paying the company very well. This in turn means they cannot pay their nurses very well. That’s a big part of this too. I whole-heartedly believe that if the companies work with parents, treat them well, are open and honest, and at least acknowledge a need for a better system; we can be better advocates for them as well. Because the reality of a poor paying job often results in nurses who have no experience and are starting out, or who can’t get a job where they would prefer. That doesn’t make them bad people, but the results of this paired with a foggy accountability system have been inexperienced care to those who need and deserve qualified care. If our experience with that company had been more positive, I would have been more inclined to not only trust them more, but to advocate with them as well. By being treated the way I was, disregarded, and then let go; it’s even clearer how much this needs to be better addressed.
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This letter made me feel manipulated and so small initially. I wanted to defend myself with what she wrote because it’s not at all representative of me, or what was said, or even what she had said. And then, I let that go. I felt empowered to advocate more. This letter is a great illustration of why we do need more accountability in home nursing care.
Kaitlyn is on multiple medications, spread out into 14 doses a day. She’s on TPN for 20 hours a day and formula through a jejunal tube for 18 hours a day. Accessing her central line has to be done so with experience and a clear understanding of protocols for her safety. It doesn’t just make me feel better to know that anyone accessing her line knows what they’re doing, it’s genuinely so important that her life could depend on it. Accessing her tube requires training as well, although thankfully less serious as her line. Her formula has to be mixed right, with the right ratio and time; or the tube clogs and that causes the machine to not function properly. When that happens, she’s not getting the calories she needs. From my perspective, this requires training and accountable care.
Let’s say I had $100 and I put it in the bank. I would know how much is there immediately. I can look online right away and monthly; the bank provides statements with any deposit and withdrawal. Relative to healthcare, when Kaitlyn has been transported by ambulance (a private company), they send a statement which lists what they did, how much they’re charging, and what the insurance is being billed, along with what they paid. There are systems in place for accountability. Yet with home care- there are no such statements or verification of hours allotted vs. hours charged. This could all be going super smoothly behind the scenes but without any accountability seen or quantified, there’s no way to know. Accountability keeps us on the same page. With Kai- he’s incredibly honest and hard working. I still check his school agenda and look over his homework. I sign his reading note, as his teacher has a system in place. It’s not to insult the kids or to make them feel dishonest. Accountability is a positive thing for everyone. From my experience, when the accountability is clear, I see better quality all around.
In home care- I see a need for fiscal accountability & training accountability. While I realize it’s not illegal to be rude, being treated respectfully would have been a great thing. When I spoke to the owner during the meeting, she spoke to the valid frustrations with Medi-Cal not paying the company very well. This in turn means they cannot pay their nurses very well. That’s a big part of this too. I whole-heartedly believe that if the companies work with parents, treat them well, are open and honest, and at least acknowledge a need for a better system; we can be better advocates for them as well. Because the reality of a poor paying job often results in nurses who have no experience and are starting out, or who can’t get a job where they would prefer. That doesn’t make them bad people, but the results of this paired with a foggy accountability system have been inexperienced care to those who need and deserve qualified care. If our experience with that company had been more positive, I would have been more inclined to not only trust them more, but to advocate with them as well. By being treated the way I was, disregarded, and then let go; it’s even clearer how much this needs to be better addressed.
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