Recently I was honored to be a guest writer for a friend’s blog- Journey with the Johnsons. She asked me to honestly share some of my thoughts, fears, and experiences as a mom with a complex chronic child. I was surprised at how well the article was received and decided to share a copy of it here as well. These are feelings I always carry with me, but very rarely ever share. Hopefully some other moms out there can get a little hope knowing that they are not alone in their fears. Please, be gentle, this is not an easy one for me to share.

Casey, has MANY medical issues. Her condition is considered degenerative (getting worse over time). While her personality is bigger every day, her body is slowly (sometimes quickly) failing. Her list of diagnoses grows and grows. Some of the diagnoses are serious and we lose a lot of sleep over them while others are a little easier to handle.

As Casey grows her lungs are getting weaker. She needs oxygen most of the time, where even just 6 months ago she rarely ever needed it. Putting a nasal cannula on is easy, but what this signifies is very hard to accept. I know that her needing more oxygen means her lungs are getting worse. Her bones are very brittle and she breaks very easily. The bigger she gets the harder it is to move her and position her and she is at higher risk for more breaks. She has skin issues as well that increase as she grows. Her seizure activity and her GI issues are more complex each day.

We have been on borrowed time since Casey was born; this is something we are reminded of often. We have talked with her many specialists about what our future holds. We know her lungs will fail, we know her GI system will fail, we know her seizures will worsen, we know her body deformities will add to the internal systems failing and will eventually cause her pain.

For some people the end is quick. They may get sick and then in weeks or months it worsens and that’s the end. For some they may have a catastrophic event- a heart attack, a stroke, a big seizure. For others, like Casey, it’s a slow progression that started the day she was born. Some major illnesses speed up the progression, while some of her treatments may slow it down. We are very aware every single day that our daughter is dying. This takes a toll on a person.

On Casey’s good days we do everything we can to fill the day with things we know she enjoys. On bad days, we do our best to comfort her and to let her know she is loved. On bad days, especially when we seem to have many of them, we can’t help but wonder if our time is running out. In the back of our minds we are always preparing for the end. What will it look like, how can we be sure she is not hurting or scared, will we know when it’s time for us to let her go?

Being part of the special needs community has many rewards. I get to meet so many amazing people. One big down side however, is the loss. It never gets easier to watch someone lose their child. There are some children that remind me of my own, these losses are very hard and are very real reminders that at any day it could be my child.

My husband is my rock. He and I share our hopes and fears for our daughter. Some days are really hard. We kind of take turns pulling each other back up. I cannot imagine going through this without him. We have amazing friends and family that support Casey (and us). On bad days I may not return calls, or I may be a bit of a downer. Our support system never leaves our side or takes it personal if I disappear for a little while.

I have lost a few friends and we have grown apart from some family over the years. It hurts when relationships end, but the relationships that have remained and the new relationships that have grown are REAL. I know that the people in my life right now are in it for the long haul. I value the relationships I have in my life so much and I am so thankful for our amazing support system.

My priorities in life have changed a lot since Casey was born. I used to care about clothes, vacations, nice cars, and a lot of material things. I don’t care about any of that anymore. Now I care about the people in my life. Mostly, I care about Casey and making sure that she knows how much she is loved every single moment. The life I live now is not at all the life I pictured for myself. It is full life, and a happy life, just a very different life than I had planned.

Early on we were able to fill all of our hours with one nurse. However, as we added more shifts (day and night) we also had to add more nurses. Building a team and everyone working together is crucial. We encourage our nurses to not only chart what is required by the agency, but we also encourage them to talk to each other. We keep all of their phone numbers listed with the current schedule and we encourage them to talk to each other about schedule changes, changes in the plan of care, or anything.

We have a few communication stations through out the house. We have a PRN whiteboard on the fridge. Yes, they also mark the medications given on the MAR, but the whiteboard is a quick and easy way for them, us, and anyone to see which PRN medications Casey has had and/or may have at a given time. We have another whiteboard also on the fridge for notes and needs. The top section is used to make sure everyone sees any changes in doses, new medications, new concerns, therapy schedule changes, upcoming appointments, etc. Then the needs section makes it easy for me to know to pick up next time I am out (Benadryl, hand soap, toilet paper, lotion). In our supply closet we keep a chart that shows all of the monthly and PRN supplies, when they were last filled, and how to get more. On the other side of the supply closet we keep a task chart. There are some tasks that are done as time allows (soaking syringes, cleaning the concentrator filters, restocking the mini-supply stations, and a few others). We know some days Casey requires 100% of the nurses attention, but on other days there is some down time. During this down time our nurses are great about helping out with these tasks. In order to make sure it’s not the same tasks every time, but that all get rotated and done, they write down the date most recently completed.

In addition to our home health team, we also have a large team of doctors, their staffs, therapists, teachers, social workers, case managers and I am sure I missing someone. We work hard to make sure that our home team and our external care team talk to each other as well. Our external care team meets our home team at appointments. When we have to call things in, I make sure to cc the nurses on emails or pass the phone to them for the official orders. There are times when our home nurses help out and call the clinics for us about a concern, they may call the DME to get supplies, they may have to call and reschedule an appointment if something comes up and I can not take care of it. We encourage our team to all work together.

At least once a year, sometimes more, we have a care conference. Most of our external care team will all come together in a room (or on the phone) to take a collaborative approach to any concerns we have. With Casey having so many medical complications, it is easy for something to fix one thing but break something else. Having everyone work together to make sure the plan put in place is best for Casey makes a huge difference. Our home team is usually in these meetings as well. We like to have them there to be sure they can address concerns they may have since they will be carrying out the plan of care.

It can seem like a lot of extra work to coordinate all of the different members of our care team (especially since it continues to grow). I have found this extra effort is totally worth it. If your team is not talking to each other and on the same page, the quality of care will quickly decline. Whether your team is only a few individuals or enough to start a football team, teamwork is very important. If we have a nurse that does not work well with the team we don’t keep them. Casey is the is team captain, and we all have to play together.

This article was originally created for and published by Pediatric Home Service

Growing up I was a pretty healthy kid, as were my siblings. When we would get sick or injured we would go the doctor or hospital, they would give us medicine, casts, stitches, etc and then in a few days we would fine. Medicine to me was very black and white. However, after having Casey I realized it is actually very gray.

Early on we took Casey to the doctor or hospital fairly often in hopes of having a symptom “fixed”. Time after time we ended up with more questions than answers. We joke that on Casey’s best day we could visit the ER and they would want to admit her. It’s a joke, but also very true. People that do not see her often panic when they meet her and the initial response is, “what can we fix?”. That means that when there is a real problem and we head to the hospital, we know there is a very strong chance we will be staying a while.

We used to get very frustrated. We would take Casey in for one thing, they would admit her, then they would want to try to address 10 other things that we already know can not be improved. Doctors would run test after test and it took a huge toll on Casey. Each hospital admittance was a major set back (some we still, and likely won’t fully recover).

Over the years we have added more and more specialists to Casey’s care team and we have added a lot of equipment to our home. We refer to our home as the BICU- Barnes Intensive Care Unit. We really do have nearly all the equipment that the hospital uses when we are in patient. With the exception of blood transfusions and surgical procedures there is not much we can’t do at home. Casey’s care team all fully understand that she will respond and recover much quicker at home and they do everything they can to help us keep her here or quickly get her back here in cases where we do end up in the hospital.

A lot of our friends with healthy children don’t understand. They see Casey and assume we have to be in the hospital all the time. When we tell them about a symptom or something we are dealing with their typical reaction is “are you heading to the ER?” When we tell them, “no, that’s the last place we plan to go.” They are often very confused. Many people that do not live our lives still see medicine very much like I used to- black and white. The thought of suctioning blood out of their child’s stomach or using a ventilator to re-inflate a lung at home is crazy to them.

Sadly, for medically complex children like Casey, the hospital is our last resort. Here are our main 5 reasons why we avoid the hospital:

1. Standard of Care
   There is a standard of care (SOC) that is in place at all hospitals. This standard is designed around the majority of patients. Complex patients are considered 1%ers, so the SOC is not designed with them in mind. The SOC is typically very aggressive. Patients that are typically healthy usually respond well to the aggressive treatments. The treatments are targeting the ill or damaged area. For complex patients, these aggressive treatments can be harmful. A aggressive respiratory treatment may take a toll on the patients GI system for example. A healthy patient’s GI system can take the hit, a complex patient’s GI may not. Often times as a parent of a complex child we feel very stuck. The medical team comes in and suggests the SOC and we know from experience that our child will not respond well. In some cases the team knows our child and listens/agrees, but in many cases they see our resistance to treatment as bad parenting. We often feel bullied into allowing the team to do what they want and then our child ends up paying the price. We feel like we can’t say no without the threat of CPS being called in and things getting even worse for our child. It’s a very scary situation. In most cases we give a little and pick our battles, but our kids are often put through a lot of unnecessary stress.
2. Needs
   Complex patients have a lot of medical needs. This may be schedule medications, breathing treatments, therapies, equipment, etc. When we are at home everything is laid out in a way that these needs are met and everything needed is readily available. When you go into the hospital, you can’t take EVERYTHING with you. The hospital manages all of the medications, the rooms are too small to bring all of the items that you may need. There is a nurse assigned to each patient. Depending on the needs of the patients the nurse may have 1 patient at a time or 6 (I have heard of even more in some cases). When you need a medication, your nurse may not be able to get it to you right away. The equipment being used may not work exactly as you are used to your own equipment working. Diaper sizes are not all available. The brand of formula may not be available. It doesn’t seem like a big deal, but when all of these add up and not getting the pain medication on time triggers seizures that then kick off another series of events, it becomes a very big deal for complex patients.
3. Care
   Complex patients typically have some sort of home health in place. For us we have a team of nurses that help with Casey’s care. These nurses train on Casey’s specific needs. Someone is by Casey’s side 24×7 to manage her complex airway, watch for seizures, manage meds, etc. When you check into a hospital the hospital staff takes over 100%. Our home nurses that know Casey are no longer able to manage her needs. Even in cases where we are the nurses only patient, the nurse is not by Casey’s side the entire time. It takes days to learn Casey’s airway needs and positioning. When we are in the hospital, the nurses change every 12 hours and we don’t always have the same nurse the next day/night. The hospital nurses do not learn Casey’s specific needs. That means that while in the hospital we manage all of Casey’s needs (24×7). The hospital nurse brings us the medications, and supports us in any way that he/she can, but we are the ones doing all of the hands on care. This includes the night care. Casey requires suctioning, diapers, etc all through the night. I stay up, next to her bed, all night long to provide whatever she may need. It’s exhausting for the caregivers to be in the hospital setting without the help and staff that we rely on at home.
4. Sleep
   Not only are caregivers exhausted without the help we are used to, but the patients don’t sleep well either. There are people coming in at least every few hours (maybe more) to check vitals, to ask questions, etc. The door is always opening and closing, lights are on and off, it is not a restful setting. One of the most important things needed for any recovery is sleep.
5. Coordinating Discharge
   When a complex patient is in the hospital, their home health nurses still need to work. Usually they will end up picking up shifts with other patients. When we are ready to come back home, it sometimes takes a few shifts/days to get our nurses back. Most agencies are pretty good about getting the nurses that know the patient back with that patient as quick as possible, but there are some cases where that is not an option and the family has to now train new nurses. Depending on how long you are in the hospital, your medical supplies may have been put on hold as well. Getting your supplies shipped out and any new equipment on hand takes time as well. There have been multiple times that we were hostages basically of the DME (the company providing the equipment we need). We would be ready to go home, but the hospital could not discharge us until we had this item. In some cases this took multiple days to get in place.

While the hospital can be the answer for most patients, it is not the answer for all.