If you follow J's Journey via blog, Facebook page or my personal Facebook, you've probably noticed that most hospital stays end up with me becoming a little emotionally charged.
I want to explain a few things; some things that I recently have analyzed and that are likely not understood by others who are not frequently in and out of hospitals. We just got finished with another difficult hospital stay. As usual, it was not fun, full of drama, had many ups and downs, and left me feeling completely exhausted, frustrated and out of control. I've often wondered why I struggle with hospital stays. I've wondered if I really wasn't made to be on this crazy journey. I've wondered if it triggers my depression, my fight of flight response or just brings out my aggressive side. But last night I had a whole new understanding come to light, and honestly, it really doesn't have anything to do with ME or my issues. It just is.
There are many many families out there who have experiences with surgeries, illness and hospital stays. I would assume most families do at some point. Most families don't have to battle their way through. Most families don't have the drama and the arguments and the frustration we do during hospital stays. Most families get through without having a meltdown. Why is that? Is it simply because our family experiences more hospital stays than most? Maybe, but I don't think so. I would dare say that many special needs families who are frequent flyers at a children's hospital do understand our regular struggle and have had some difficult hospitalizations. But even for many of them, it doesn't seem to be every stay that comes with so many challenges I have come to realize that our very specific circumstance sets us up for very challenging hospital stays, nearly every time. It's not me or my personality; it isn't the doctors; it isn't Jayson and his conditions; it isn't mistakes and misundertandings; IT IS THE SYSTEM. And I don't see it changing any time soon.
Here are why hospital stays are so hard for our family, with our specific situation:
**Jayson is undiagnosed. There's no name to the syndrome or disease that seems to affect every part of his body. His genes are different, and this affects everything he is made of, and we have no idea what it is. We do not know what to expect. We can't and don't have any expectations for recovery time in a hospital or possible challenges we might encounter. We don't have timelines. We don't have a set of warnings or an instruction manual that comes with a diagnosis. We don't have explanations for what is happening, what is going right or what is going wrong. We don't have an answer key to our questions, other cases to refer to, or other families to cling to. When you don't have a diagnosis, you don't have experts. We don't belong, anywhere. And NO ONE knows anything, because the very thing affecting every gene is in body does not even have a name. This honestly affects absolutely everything during a hospital stay, including my personal sanity. I cannot leave his bedside because I am his expert. I can't simply say, "He has {insert name here} syndrome" and have the doctors instantly nod and understand what he deals with on a daily basis. I have to narrate a lengthy history and list of conditions each and every time someone enters the room, and ensure I am constantly available and by J's side to answer questions about his conditions and care. Without a diagnosis, no one is Jayson's expert; no one understands Jayson or what his body is doing, which manages to frustrate and confuse doctors, surgeons, nurses, technicians, phlebotomists, radiologists, lab techs, Mommy and Daddy, and even Jayson.
**We don't have "a guy". We have no guys! When there's no diagnosis, there's no expert. But even more challenging with Jayson, we don't have that ONE THING that seems to affect everything else. He's not a heart hero, a kidney kid, or a preemie. His lungs aren't causing his issues, his GI system isn't throwing everything off, and his airway doesn't collapse with everything we do. He is very neurologically complex, but sooo complex neurology is perplexed and doesn't even accept him as a typical neuro kid. Most of our friends who have special kids have that "one guy". As they are headed inpatient with an emergency, they often send a text, an email or a phone call to their guy. That guy is involved on a personal level, and coordinating the care. He either shows up at admission or at some point during the stay. He reviews labs and decisions made by the hospital team. He crosses t's and dots the i's. He is constantly protecting that one organ or that one system, and making suggestions for care that he commonly sees with kids with that condition. He makes sure that kid is taken care of, because he's their guy. We don't have any of those. J does not have one main organ system that is array that makes him stand out to a particular specialist, who in turn becomes his advocate and his expert. Instead, Jayson has quirky things with nearly all of his systems. None of them is responsible, but they are all affected. We don't have that one doctor to call. In fact, at this point, I do not have a single personal phone number to any of our doctors, not even our pediatrician. That may seem alarming to many special mommies when many of them have their "guy" on speed dial, but we just don't warrant that type of care since J doesn't seem to have one specific condition that is responsible for the bulk of his issues. I should mention the closest thing we have to "a guy"-- Dr. M, our comprehensive care doctor. She is amazing and coordinates a lot of Jayson's care. We go to her A LOT. She is available via email 24/7 and helps us so much. However, we only see her every 6 months and her workload is HEAVY. She has all of the most complex kids. It seems it's easy for Jayson to get lost in that shuffle too. Additionally, she doesn't really do rounds at the hospital. She can't just show up when we are inpatient, and she can't manage things while we are there. She is busy in clinic with patients. Even with her on our side as a key player of our team, we need "a guy", but I don't know who would be qualified to fill those shoes.
**We don't have a leader to our team. We have 17 doctors and specialists. That's a lot of doctors. When that many professionals get involved in one child's care, things get complex and complicated. We don't have a team leader or one main doctor coordinating Jayson's care. It would be easier for hospital inpatient teams to collaborate and connect with Jayson's doctors if we had a team leader, a single point of contact, one main communicator and Jayson expert. When you have so many members to the team without a leader, it is difficult to know if, when and how things are getting done. When Jayson goes inpatient for a neurological issue, I'm sure our team of doctors would assume that our neurologist would have been contacted and be in touch with us, that he is the one handling things. It never happens that way. Our specialists are not individually contacted, not even when the problem exists within their specialty. With 17 players, team members assume Jayson is being taken care of by a member of the team and that his needs are being addressed by somebody. Without a leader, the ball is dropped and no one is taking care of Jayson. Again, Dr. M with Comprehensive Care is the closest we have to that. Coordinating J's care is basically her job. But that's just it, she is responsible for coordinating alllll of her very complex patients' care, and it usually doesn't transfer to inpatient stays. We need a team lead doc who steps up because he only has a handful of complex patients he is highly involved with, and Jayson is one of them. We don't have that person, yet. So in the hospital, Mike and I have to be the team leads. We are the ones emailing doctors, collecting medical documents and clinical notes, contacting specific clinics, making phone calls, reaching out and keeping key players informed. We are the ones who bring more than one doc together in an email to discuss a concern or a problem. We are the ones who bring up possible conditions, diagnoses, or solutions that we research on our own. We are the ones who are thinking of Jayson and problem solving. With many complex kids, there tends to be one main doctor who is frequently thinking of that child, reaching out, collaborating, problem solving, connecting with other doctors, and remaining involved in the inpatient hospital care. That doctor tends to be the expert of their diagnosis or main condition. They tend to be the main point of contact when issues arise, and they can get other doctors together. Due to the facts mentioned above, we don't have an expert or team lead. All of J's docs give Jayson excellent care on an outpatient basis, individually, in their offices. When we call for them, they are often there. But there isn't anyone taking control, keeping everyone informed, or reaching out when Jayson isn't doing well in the hospital. The hospital teams don't have a team lead doctor or expert to contact whenever we are inpatient or a person to contact when they are stumped. I often wonder what good it is to have so many brilliant minds as a part of our team when nobody ever gets those brilliant minds together to think of my child? I wish we had a doctor who felt strongly they should take the lead and be Jayson's expert and coordinate his care.
- There is an attending doctor who is licensed and responsible for student doctors. The attending likely has a large ego, inadequate bedside manner, and is often mute and behind the scenes. Some are fantastic.
- Then there an intern, a graduated resident doctor in their first year of residency, we call them baby docs.
- Then there is often another resident or two who are graduated doctors who range in experience and years in their residency.
- In many teams you will also have a fellow, who has finished their residency and is getting advanced training in a particular subspecialty.
This team of doctors comes by every day between usually 9-11 and they stay for about 5 minutes in your room. A good team asks questions and start a good conversation. Most just spout off numbers they saw in the labs or medical notes and a share a plan that is not customized whatsoever to your child's situation. They say they will come back later that afternoon, but rarely ever do. They have all of the power. You have a question? It has to be message logged to the doctor who may or may not acknowledge it that day. You have a request or suggestion? A page is sent, which is only sometimes returned. You want a change of care? It's going to take a minimum of 24 hours. And we're talking for something small, like your child needs a suppository. No one can make any decision regarding your child without this team. They call all of the shots, and they know NOTHING about Jayson. It has taken 3 1/2 years for our specialists to get to know all they do about him, but these doctors who have spent 5 minutes with him are the ones making every decision about his care, often in a situation of crisis or emergency, and they have no knowledge of Jayson. They don't ever consult with Jayson's team of specialists, ever. In fact, if you suggest it, it offends them and damages your relationship. Our doctors who we invest so much time in are not permitted to easily become involved in Jayson's care during an inpatient stay. They aren't all notified when he is in the hospital, unless I call them or send them an email. There have been several times where Jayson was not responding to illness or a surgery in a typical way. The attending team comes up with all of the these plans that would work great for a typical child who follows a typical pattern of recovery. But we have to go through the motions and allow Jayson to get worse and not respond to their typical plans before we can get them to try less traditional responses. If we could consult with J's team, many of his doctors would automatically skip the traditional treatments and move to a more customized plan for Jayson. There have been many times we have discharged earlier than we were comfortable for the simple fact that we could get to our regular doctors more easily and quickly OUTPATIENT to receive the care Jayson needed. That is sad, and the system is broken. Jayson's doctors who care for him all throughout the year should be the ones informed when he is inpatient. They should be encouraged to send in suggestions involving his care, and they should be respected enough to be heard. Jayson has paid the price too many times for the faulty hospital system and how it works during inpatient stays, and it frustrates me to the point of aggression every single time.
**The simple explanation: Things never go as planned. With Jayson being so complex, you can place a bet on the fact that things won't go as planned. An outpatient procedure often turns into an admission, a 2-day stay turns into 4. It gets tiring and frustrating for things to never go as planned. There's a lot involved in this simple explanation, too. Hospitals receive a lot of pressure to follow protocols and insurance guidelines, including length of hospital stays. Far too often they focus on this pressure rather than the patient. For typical kids, they can follow a typical treatment, recovery and discharge plan. But for Jayson, that pressure is just frustrating and annoying. I can't make him recover any faster. I can't help the fact that his labs are off or his pain isn't well controlled. It's not my fault that when we get one problem under control, another pops up. I already feel that stress from Jayson as he's trying to get better; I DON'T want to hear it or feel it from the hospital administrative end of things. I don't want to feel pushed out the door or like the team is frustrated because Jayson isn't responding as he should and we are ending our allotted time for a stay and they aren't any closer to understanding what is going on. Even more, I don't want to feel pressured to discharge before Jayson is ready. I hate coming right back. I wish instead that there was more flexibility with these complex kids and that they were able to take their own course. I wish that we expected things to not go as planned and that there wasn't a timeline or pressure. I wish Jayson got to lead the progress of our hospital stay and that it wasn't based on numbers and dollar signs.
**Involved parents are often seen as a pain. I have experienced enough hospital visits and overheard enough conversations among professionals to know that I am never liked. Hospital teams love easy going parents; even absent parents are great! They don't like the ones who ask about the exact lab numbers or data. They don't like when their plans are questioned or when they request an explanation for a particular decision or plan of care. They especially don't like it when they are challenged or if a parent offers a suggestion. It is easier for the hospital teams to NOT have an involved parent. Many times I have overheard conversations in the hallway among team members that have included statements like, "Mom is very involved." In nearly every clinical and hospital summary note for Jayson, it states something like, "Mom is very involved." I highly doubt one would dare write on a summary note, "Mom was absent." or "Mom wasn't really there." And I don't think they would note something like, "Mom was agreeable and easy going." It comes across to me that being involved is seen as a bad thing, and it is carefully noted. It is never commented how helpful it is that we are so involved or that we bring a lot to the team. I don't really care how it is viewed, because I am J's expert. I am his advocate and his voice, and I will always be there. But I wish that my involvement was seen as the ASSET that it is, instead of a pain.
**No sleep, no breaks, no contact with the outside world. These are the things that drive any parent mad during a hospital stay, but some of the things mentioned above exacerbate this problem for our family. It's not only the vitals, monitor alarms and frequent door openings that keep me awake at night during a hospital stay. I also am awake all night because things rarely go as planned, my son rarely responds the way he is supposed to, and he needs someone who knows his baseline to watch him all night. He doesn't have a diagnosis, so they don't know what a kid with his diagnosis does during the night. When Jayson struggles, it's often at night while he's sleeping. Jayson doesn't show pain. Jayson doesn't vomit when he's in distress. Jayson has random breathing episodes that no one understands. Jayson's signs are very subtle and I have to relay the message. He frequently sets off alarms and I have to explain to nurses when his behavior is concerning and when it is Jayson doing Jayson things. I am also often awake at night preparing for the next day's rounds. Many of the teams don't have the time to review all of Jayson's history and charts; they can't simply look at a diagnosis and know what that entails. They too often assume Jayson will follow a typical pattern, and when he doesn't that it will resolve on its own with time. Some teams come in and try and argue with a current diagnosis; others try and throw out a new one without much thought. I have to be prepared so that I can quickly and clearly summarize my son and what we know about him, and that involves many rare things doctors are not always familiar with. I have to have evidence to show that my son is seizing, in pain or sick. My son's seizures don't register on an EEG, he doesn't cry when he's in pain, he doesn't run fevers with infections, and he doesn't always look sick when he's in trouble. There have been many nights I have had to collect clinical notes from our medical records, videos of behaviors at baseline and videos of concerning episodes, pictures of Jayson well and pictures of Jayson sick. I have reviewed past blog posts to review past problems and findings. I have reviewed screenshots of whiteboard notes from past hospital stays to remember information that was not included in hospital summary documents. I have read medical journal articles to understand lab results or findings and I always get online to review Jayson's labs, tests, procedures and medical notes from the hospital stay to ensure nothing is missed. I study terminology the doctors mention so I can understand it and know which questions to ask. I collect all of this information and my questions in a tight little package when the team is not adequately responding to Jayson's needs because I know I have ONE chance, only three or four minutes, to communicate all of these things to Jayson's doctors, get answers to all of my questions, and do anything I can to help the team understand Jayson, which will help them in treating him. Because he's non-verbal, mobile, and undiagnosed, I don't ever leave his side. He can't tell his nurses how he's feeling or what he needs. He can easily climb out of his bed, fall down and hurt himself without someone right next to him. Anyone who walks into the room needs me to be Jayson's expert since he doesn't have a diagnosis. And I can't take the risk of missing a doctor who might come in while I run to lunch or to take a shower. I never leave those four walls of the room, ever, for days. I don't know the date. I don't know the weather. I don't know if it's day or night. I don't talk to anyone about anything not medically related the entire time I'm there. This alone is enough to drive a person mad. Combine it with our other challenges, and I am completely losing it by the end of a hospital stay.
So there you have it. Here are some reasons why we struggle every single hospital visit.
No, I don't crave the drama. No, I'm not a controversial or aggressive person. No, I don't go into a hospital stay with my boxing gloves on. But I inevitably find myself wearing them because the process stinks. The system is against us for these reasons, and we are just more likely to have a rough hospital stay than a good one.
I can hope that the system can change, and I hope to be a part of it. I know the hospital we visit is aware of some of these needs and I also know they have some plans to address them. I hope to see these things come to pass. I also hope things get easier as we come to know more about Jayson, his conditions, and maybe even get a diagnosis. But in the meantime, we need patience, love and support from those around us. We will find ourselves in the hospital often, and it likely won't be a fun experience. I will blog about it and write about it on Facebook. I don't mean to complain. I don't mean to be negative. I mean to be real with you. I hope this blog post helps you understand a little more about our experiences in the hospital, why it is so challenging, why we may not answer or return phone calls, why we are emotional, why we get frustrated and aggressive, and why it takes a while to recover from the physical, emotional and mental trauma from a hospital stay.
No comments:
Post a Comment