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:
- 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.
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.
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.
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.
- 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.