I have spent the past 5 days in a hospital room with my child, receiving constant reports of all the things that he does not have. Covid? Negative. (Repeat covid? Still negative.) Covid anti-body? Negative. Lyme? Negative. Mono? Parvo? Negative. Negative. Viruses and bacterias and diseases that seem to have more consonants than vowels? All negative. As the lab results trickle in, the doctors seem perplexed by the symptoms that keep him here. He is covered in a rash that comes and goes with no predictability and a fever that persists. His little eyes are beginning to show tell-tale signs of Kawasaki Syndrome, even though he doesn’t have all the markers to even be diagnosed confidently with Incomplete Kawasaki Syndrome. He has received not one but two infusions of immunoglobulins to help his body fight whatever infection or virus is battling inside of him. And still he lies here with the return of a rash and heat emanating from his skin. The doctors, of which there are many, have a plan. Their plan is about time windows and fever thresholds and includes a Team: general pediatricians, infectious disease doctors, rheumatologists, cardiologists…the list is long. It is, I presume, a thoughtful plan, based on their collective knowledge and experience. So I wait.
Here is what I know about being in the hospital with a child with an unclear diagnosis in the middle of a pandemic:
- No one knows enough about this. There is new information every day. Every hour. In fact, my son may be a part of a small cluster (he is the 5th child in this hospital) with similar symptoms that match nothing except each other. Could be coincidence….could be something else altogether. I have to stay away from all media and news reports.
- Despite being in a state-of-the-art children’s hospital with an amazing reputation for taking care of the whole child, I have been in this one room the entire time. I am not allowed to visit the fancy cafe. I cannot go to the solarium for a brief respite. My son cannot go to the playroom or the performance center or even to the aquarium. We were brought to this room in a silent parade of sick children from the emergency room, led by masked nurses. Once here, I was told that I could not leave for any reason. I had to remain inside and, please, when someone enters, wear a mask.
- The incredible nurses and medical technicians now have an expanded job description. If I need a cup of coffee? Call a nurse. My son’s water needs to be refilled? Call a nurse. My husband has brought a change of clothes and left a bag at security? Call a nurse. Dinner forgot to bring a fork for my salad? Call a nurse. They are now waiters and waitresses, messengers and couriers, in addition to medical professionals.
- Our child, who needs both of his parents, can only have one of us. For the entire time. Aaron and I had conversation before we were directed to the ER and we decided that I would come and he would stay home with our other kids. So I am here and he is there. Here, I have no space to break down and cry from exhaustion and fear. I have no privacy for conversations that spin down the rabbit hole of uncertainty. I am responsible for taking in all of the information and relaying it accurately. There, daily life continues with two kids who need all that he has to give and a dog that doesn’t seem to stop barking. He is answering questions and soothing fears and providing constant updates. We are connected only through the phone. He must trust that I am getting it right. I must trust that I am getting it right. He has to relinquish control and I have to stay in control. There is no opportunity for us to switch. We can’t balance each other.
While the din of cartoons competes with the constant beeps from the monitor (which I still haven’t completely figured out), I write, waiting for my coffee and scrutinizing our son for any changes or signs that this will be ending. My phone recharges, drained from an overnight of texts and reassurances. I need a shower. I need answers. Having a child in the hospital is a brand of hell that I didn’t know existed. Having a child in the hospital during a pandemic is beyond comprehension.