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Advice for Advocates

As I wrote about in a previous post (What is my role in all of this?), I am still trying to figure out what exactly it is that I am supposed to be doing here, but I am starting to figure it out.

This post is titled “Advice for Advocates” because, as a parent, one of your jobs is to advocate for your child, who can’t speak for himself. The doctors continually tell me, “Look at the patient, not the numbers,” and that is something that you are uniquely qualified to do. You are with him day in and day out, and you are aware of all the little changes in him. You are bonded with him, and you desperately love him. Don’t be afraid to ask questions if you see a change in your baby.

Daniel has been alive for 34 days, which means we have spent 34 days in the hospital. That is 6 days in the NICU, and 28 days in the PICU. I have met dozens of doctors– including surgeons, pediatric ICU specialists, cardiologists, fellows, residents, and attending physicians– and dozens of nurses, respiratory therapists, physician assistants, occupational therapists, etc.

I am an English major, and I taught for 9 years before this in grades 8-12. Full disclosure– the last time I had any science class was when I was 18 and a freshman at Texas A&M. I took introductory chemistry. That was 12 years ago, and shortly after finishing that class, I changed my major to English. Because of my lack of education in science, I have absolutely no idea what these people are trying to tell me most of the time. But I am learning, and I am excited to share my limited knowledge with you 🙂

Below is a list of advice for anyone who is a patient care advocate, based on my own experience. If you have further advice, please email me. I would love to add to my list.

1.Find a hospital you trust. We received Daniel’s HLHS diagnosis on March 31st. I am grateful for Scott & White, but the way the diagnosis was communicated to us was rather traumatic. I wrote about it in the post “D-Day.” My brother and sister-in-law are both surgeons at Memorial Hermann Hospital. When I told them about Daniel’s diagnosis, my sister-in-law Christi started investigating. She told us a few days after our diagnosis about Dr. Salazar, the new pediatric heart surgeon at Memorial Hermann. Both she and my brother were obviously excited about his credentials and experience, and they both highly recommended the Children’s Memorial Hermann program.

On April 4th, five days after receiving the initial diagnosis, I had my first round of appointments at The Fetal Center at Children’s Memorial Hermann. I documented this appointment in “Keep your eyes on where you want to go. Don’t look at the trees.” I was immediately impressed with how well-coordinated everything was. I live 3 hours from the hospital, but they had no trouble scheduling all my appointments for the same day.  I had five different appointments, but they were all in the same place, so the doctors came to me. They all were aware of what the other was doing, and that was really amazing. It was obviously a well-oiled machine, and that built my trust even more.

Then we met Dr. Salazar, one of Daniel’s surgeons, and any lingering doubts I had soon vanished. His educational background and extensive experience were impressive, but he is also a father. I could tell he looks at his patients as human beings, not just hearts needing to be worked on. He was the first one who really gave us hope. We met Dr. Dodge-Khatami the week Daniel was born. He had just been hired at the hospital, so I was a little bit shocked when he was introduced to us because I hadn’t met him before. However, once again, John and Christi had the scoop. Bottom line–this guy is amazing! Even if I didn’t have John and Christi, I still would have immediately trusted Dr. Dodge-Khatami because of his professionalism and obvious skill, but also because of Dr. Salazar’s trust in him. Apparently they were partners before they came to Memorial Hermann. It was a little bit of an adjustment because he and Dr. Salazar have such different styles of communicating, but I had total confidence in him from the very beginning. When someone asks me who I prefer, I can honestly say it is like saying there is half a dozen in one basket, six in the other.

There was never a moment of doubt for me that we had Daniel in the right place. I realize most people don’t have the benefit of having family members who are well-connected surgeons, but it is extremely important that you choose an institution you trust. If you are questioning the surgeons and the critical care teams, you will probably make yourself insane. Do your research, take tours of the PICU floors, meet the surgeons. The more comfortable and confident you feel about the people in charge of your baby’s care, the better you will feel throughout this nightmare.

2.Remember who you are. Unless you have a background in healthcare, it is really impossible to follow the pediatric ICU team’s decisions. Please try to remember– the knowledge they graciously try to impart to you is like an iceberg. They tell you a few things, but there is SO MUCH education and experience informing their decisions.

For example, when Daniel was first born, the doctors explained to me that they wanted his oxygen saturation numbers to be between 75 and 85. One morning, Daniel’s oxygen saturation had been 92. I was really alarmed when one of the attending physicians actually went UP on the oxygen he was receiving through his nasal canula. If his oxygen saturation was above normal, why would they INCREASE it?? Apparently they increased it because his PO2 number was actually low. That is the oxygen his blood is actually absorbing. I knew what one number meant, so it gave me the illusion that I knew something. In reality, I didn’t know much at all.

That was my first realization that I will never be able to keep up with all the theory that informs these peoples’ decisions. Let’s get real. They’ve been through DECADES of education and training to get where they are today. The knowledge of medical school, residencies, multiple fellowships, and years of experience as an attending physician can’t exactly be imparted in a single day.

The silver lining is that most of these attending physicians are actually teachers. If your child is receiving care in a teaching hospital, most of the doctors are probably involved in the medical school. Some of them absolutely LOVE trying to teach you things. I love learning about Daniel’s care because it makes me feel connected to him, so it is a symbiotic relationship here. I love learning; they love teaching.

Just because you know what a couple of things mean doesn’t mean you know everything. If you don’t understand something, ask! They will probably love explaining it to you. If you are worried because a decision made in rounds doesn’t make sense based on the two things you know, then ask! But don’t freak out because they aren’t following the care plan that makes sense to you.

3. Don’t forget that all of these people are human beings. It can be really tricky navigating through the differing personalities, flaws, visions, and opinions. For us, one doctor will say Daniel’s swelling is the main factor stopping him from being extubated, and another one will say it actually has to do with the bicarb and CO2 in his blood, while yet another will say it has to do with FiO2 support he has through the vent. It can be frustrating getting so many different thoughts about the same baby. The fact is that all of these people are valuable assets to the whole team, and they have all talked about Daniel. If you are frustrated because you aren’t getting the answers you want, try to remember what I wrote in number 2. The body is an extremely complicated thing, and there are so many tiny details that the PICU team is trying to manage.

You really need to remember this advice when dealing with nurses. The nurses have 12 hour shifts, so you will see many nurses while in the hospital, and some are better than others. The best nurses are patient and look at your baby as a person. The best nurse we have had would frequently come in and pick Daniel up when he was upset. This was amazing because picking him up would inevitably result in having to re-organize all the lines, which most OCD nurses are less likely to do. Good nurses also value parents as important to the patient’s healing. The best nurses loved it when I would ask questions, and never made me feel bad for wanting to hold Daniel, even though it would mean re-doing all the lines. They also are ones who value my concerns. I told one of them that I heard Daniel struggling to breathe, and I could see his nostrils were flaring. Instead of looking at me in a condescending way and telling me, “it is common for babies to do that,” she instead checked him thoroughly. It turned out the respiratory therapist had turned his oxygen support way down mistakenly. Because she didn’t blow me off, we were able to catch it before he de-satted.

My least favorite nurses have been ones who think asking questions means you are challenging their authority. (This usually happens with the young nurses and rarely with the older ones). Also frustrating are ones who don’t take my concerns seriously. If I am telling you his color looks different, understand that I have seen him EVERY DAY of his life, not just for the past few hours of my shift. When dealing with a nurse you are not “clicking” with, remember a few things:

  1. It may not be his/her fault. Remember, you are a hormonal mess under a ton of stress. It might be that you are on edge because of everything you are going through. There have been multiple times that I have almost blown a gasket and, in reality, it was my own stress that was upsetting me, not the nurse. This doesn’t mean you don’t have a right to be upset; just don’t burn any bridges if you are actually part of the issue.

  2. You probably won’t have that nurse again. Just take a deep breath and try to endure until the end of her shift.

  3. Remember you will have to deal with all of these people on your floor for weeks. You don’t want to develop a reputation as someone difficult to deal with. I think it makes things 1,000 times easier when people feel like you are easy to get along with. This doesn’t mean to ignore your concerns, but it does mean that you should be really, really sure that something is a big deal before raising hell about it.

  4. Don’t be afraid to speak up if you are very sure that something is wrong. Your baby’s life is more important than ego and hurt feelings. Go take a walk, get something to eat and drink, and call a friend before you decide something is a huge deal. If you still feel passionately that there is a problem, then don’t hesitate to speak up.

4. Find a way to stay connected with your baby. This is actually your number one job. It can be really difficult to feel connected when you can’t hold him/her. For me, I have to be here for rounds in the morning. I feel most connected when I feel involved in his care. Yesterday I was sick, so I couldn’t come up until the late afternoon. I missed rounds, and I felt miserable. I felt like I was losing hold of Daniel. I want to be here because I feel close to him when I know what is going on, not because I don’t trust the professionals involved in making the decisions. Friends of mine have told me they read to their baby frequently when in the hospital. Obviously, when able, hold your baby as much as possible. It is critical that you feel like your baby’s parent, and that can be really hard when so many people are in charge of caring for him.

These are just some of the things that I have had to learn, usually the hard way. This is not an exhaustive list, so look for more to come. Email me if you have any advice for caregivers if your child has been in the hospital for several weeks.

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