When Your Baby Is Sick
Today I wanted to share about my son’s recent hospital stay. I hope you never personally have to go through any type of overnight or ER visit with your kids, but if you do, I hope that sharing our experience helps you work through your own.
Luke was diagnosed with asthma just after he turned 1. It started out as this dry, hacking cough that would kick in as soon as he fell asleep and continue throughout the night. Sometimes it would wake him out of his sleep, and other times we’d just listen to it and wring our hands in the other room, wondering what the heck was going on with our baby. He seemed completely fine during the day, but at night the hacking cough would reappear again and again.
During one of his well visits, I mentioned his symptoms and the fact that his eczema didn’t seem to be getting better despite several different treatments, and the doctor basically told us that it just needed to be managed, and there wasn’t much they could do for just a cough.
It took a whole lot of advocating over about six weeks with our primary care to finally get a recommendation of an allergist to either rule out or diagnose asthma, and at the end of Luke’s first appointment, we had our confirmed diagnosis.
Mark was the one to take Luke to the allergist, who performed a skin test on him and took down his symptoms. As soon as he heard “dry cough at night” and “eczema” he said, “Yep, those are hallmark asthma symptoms.” We were happy to finally have answers, including finding out that Luke is allergic to cats and dogs.
The assumption through our visits with the allergist was that the pets we have were triggering Luke’s asthma flare ups. However, the animals have never been allowed- or really even interested - in his room. We added an air purifier to his bedroom and kept the house vacuumed, but his flare-ups always happened when he’d get a bad cold.
Since September 2017, Luke has been to the ER three times related to his asthma flare-ups. We were admitted to the hospital for two nights the first time, then discharged from the ER the second time. This last time, we went to Abington’s ER like we have as usual, and were transferred to CHOP’s ER after close to twelve hours of treatment and monitoring. It was there, after nebulizer treatments, high flow administrations, and finally strapping him to a CPAP machine, that they still couldn’t stabilize him, and admitted him to the PICU for further treatment and monitoring.
He had been diagnosed with viral pneumonia. Since it wasn’t bacterial, there were no need for antibiotics, but the nurses and doctors informed me that the most they could do for him was keep him as comfortable as possible and support him as his health (hopefully) improved.
Through all of this I had been holding it together okay. I had to; I didn’t want Luke to know how truly scared and torn apart I was watching him get poked, prodded, and strapped to pieces of equipment. When they finally got the CPAP on him, through hitching sobs, he begged the nurse, “Please, I’m all better now, please I don’t want this on my face!”. I broke inside, but on the outside I just kept reassuring him that it wouldn’t be forever and we needed to listen to the doctors.
In the PICU, the night nurse whose name I so wish I remembered came up to me after getting Luke settled in his bed and asked me, “How are you doing?” And THAT is what finally broke my already fragile exterior. Just behind her laid my three year old baby in a metal crib with a mask strapped to his face, and an IV in his arm, and all kinds of machinery around him. I felt the tears beginning behind my eyes, but I was too completely exhausted to fully break down. I had brought him to Abington around 11:30am, and I think by that point it was around 3:00AM at the CHOP PICU. I just needed sleep.
By the following evening, he had improved enough that we were transferred to an inpatient room on a regular floor. We were there for another three days before finally getting cleared to go home. I’ll never, ever forget the look on Luke’s face when I told him we were leaving.
It wasn’t until I was safe at home locked in the bathroom in the shower that the gravity of the whole week finally hit me in one fell swoop. The tears came and just didn’t stop. I must not have been very quiet about it because Mark came running upstairs and just held me while I fell apart.
I wish I could begin to explain what it is like being a parent. If you already are a parent and you’re reading this, you don’t need that explanation, I know. But it’s crazy to me how difficult it is to put into words. These are people you’ve created, who you’d give your life for in a second, who you’d do anything for, but as they grow and begin to realize and understand their autonomy in this big crazy world, you, the parent, also begin to realize that you do not (and SHOULD NOT) have control over them. They are their own person.
And sometimes that just hits you like a ton of bricks. You just want to freeze time and sweep them up and go hide in a cave somewhere to keep them close and safe forever.
I’m happy to report now after meeting with a pulmonologist and getting his medications adjusted, Luke hasn’t had one flare-up that we haven’t been able to control since. With the help of his amazing medical team, we’ve been able to keep his asthma under control so he can get back to the VERY important business of being a normal, energetic, crazy-dancing, unbelievably imaginative three year old.
I don’t know what we did to deserve both of our kids, but I’ll never stop being so thankful that they get to be a part of our lives forever.