It Shouldn't Have to End Like This........for Anyone

In April of 2021 Elise almost died. There, I said it. It is not something I have really spoken about with anyone outside of a very small circle of people. This was not a first, and not likely to be a last close call occurrence, but it was different for sure. It has been a number of years since I stood on the outside wondering if this was the end of the line. Just like the other times, it was kind of a surreal experience. 

Elise was admitted to the hospital the day before. As she has experienced many times, we were not able to get a handle on her seizures and we could not get them to stop. 36 hours of trying various things ultimately resulted in her stopping breathing. At about 2:30 a.m. I was standing beside her bed and she was getting sick and having strange seizure like activity. She settled, closed her eyes and I tried for the 10th time to go back to bed. A couple minutes later some of her monitors started alarming. This also is not uncommon. There is a lot of false "alarming" when you are staying in a hospital. A couple of nurses came in, did a few things with her to try and change some positioning, but that didn't work. They called for respiratory who was in the room in about 30 seconds. She also tried a few things but that wasn't appearing to improve the situation either. 

At this point I don't think I was grasping how dire the situation was becoming. Not five minutes before I was standing next to her bed and talking with her. A moment later the decision was made that intervention was going to be necessary. They called a "Code Blue" and the room and hallway were filled with people almost immediately. A team of people arrived and immediately jumped into action trying to save her life. The hallway is filled with backup and people that are around to run for supplies when needed at a moments notice. They also send social work, a chaplain and security. The social worker and chaplain were my new babysitters and there to tend to whatever I needed. This was not the first time that I (or we) have been chatting with social work and a chaplain in the middle of the night. It does not get easier, but it is not as scary when you know what to expect. Several times they said something to me like, "You seem awful calm. Do you understand what is going on? Is there anything we can get you?" After talking with me a bit, it seemed they were able to figure out that this just wasn't my first rodeo. I understood full well what was going on and what most of the likely scenarios were that were playing out in front of me.

After they were able to determine that she was stable enough to be moved, they transferred her downstairs to the Pediatric ICU (PICU). Something occurred there that I was not prepared for. During these times of the COVID pandemic, they had established a new protocol that ALL new patients coming in to the PICU needed to be tested for COVID. While they were awaiting those results, only a small number of people were allowed in the room and no parents. All hospital staff was dressed like those that you see in the picture. This is a stock image that I pulled off the internet. But, it is indicative of what I could see in Elise's room.I wasn't really caught off guard that they would be testing for COVID, but I was more caught off guard by the fact that we had been in the hospital more than 24 hours already. No testing was needed before and nobody was wearing the "space suit" as I liked to call it. But, they were all wearing them in her room. Those were complete with their own respiratory units that ensured they were only breathing in filtered air of their own and nothing from the room they were standing in. I'll skip the rest of the hospital stay as it is less important to the overall story. Obviously, Elise was eventually discharged from the hospital and has been doing pretty well since then (knock on wood!). 

I have thought a lot about why that hospital stay was "different" in my mind. What about it has been eating at me? In the end I think that it comes down to the COVID protocol. I get why they do it and have no issue with how things were handled, don't misinterpret what I am saying. What hit me as I was sitting outside her room watching all of this transpire was how lonely this entire experience was for her. Was she awake and aware enough to know what was going on? If so, was the only thing she could see is a bunch of people in space suits zooming around the room? Was she going to die on that table without anyone from her family by her side? I was 10 feet away!

We have spent the past couple of weeks talking with various doctors about the COVID vaccine and whether it is appropriate for Elise. Like most parents, I worry about the long term effects of my kid getting the vaccine. But, I worry about the long term effects of them not getting it as well. We still have at least one more doctor to talk with, but it appears that the recommendation for her is to get the vaccine. As I wrestle with the consequences of her getting the vaccine or not, my mind instantly goes back to those images of me sitting in the PICU watching them work on her through the window while she was completely alone.

To vaccine or not to vaccine is not a political decision in my house. It is a purely medical decision that needs to be made with considerable thoughtfulness and conversation. The prognosis of medically fragile kids is so unpredictable. One thing I do know is that I do NOT want her to die on a table without her family around her if it can be avoided. Life should not have to end like that for Elise. Really, life shouldn't have to end like that for anyone.