If you haven’t read the rest of the story yet, start here.
We loaded our son into the car and left for the hospital. It was dark and rain was pouring down throughout the drive to the emergency department. Check-in went quickly. Our son was exhausted and still showing signs of difficulty breathing so it didn’t take very long to be seen. A chest x-ray was ordered immediately and we were settled in to wait for the results. No one seemed particularly concerned so we did our best to relax and wait. We expected to be given antibiotics and sent home.
The nurse came into our room and asked in an unusually timid manner if our son had been seen at one of the other hospitals downtown. We explained a consult we had at one point with an interventional cardiologist, but that we only went once and that doctor recommended against running any tests. I mentioned to her off-hand that we had also done several second opinions at Hopkins. “Why do you ask?” was the next obvious question. Micro expressions danced across her face, all showing signs of discomfort, and she pointedly avoided eye contact. We were to be transferred and they were deciding where. The doctor would be in shortly to answer any other questions. With that she ducked out, having not made any additional eye contact.
“That’s not a good sign,” I sighed. I stood up and stepped over to the doorway, glancing out at the nursing desk outside. The doctor was on the phone alternating between looking at the computer and our room. My husband said some words of reassurance but I don’t recall what they were. My mind was elsewhere at the time. I decided to step out and go to the bathroom. I was fairly certain I wouldn’t get another chance any time soon.
When I came back, the doctor was just hanging up the phone and followed me in. They didn’t know if our son had pneumonia. His heart was so large it was eclipsing their view of his lung. This hospital used to have 24/7 cardiology support but had lost key staff that made it possible. Our son’s case was too complex and he would be immediately transported. We disagreed on the hospital. They wanted to send us to the hospital where we one visit with the interventional cardiologist. I wanted to take him to the one where we had met with doctors for a handful of second opinions. I managed to convince them to send us to Hopkins after explaining all of the details. The doctor got back on the phone and changed the arrangements while we packed. It was the quickest transfer I’ve ever seen.
We road to Hopkins with the lights on. The roads were empty, it was the middle of the night, and the rain had stopped. My husband followed well behind. He would finish packing up things in the room and follow when he could. I had never been in an ICU (Intensive Care Unit) before and it was late. I’m not sure how long it took my husband to get to us but it felt like an eternity. I’ve never seen so many medical staff in a single hospital room. Before my brain was ready to accept my son was even having a heart issue I was signing consent for them to drain fluid off of my son’s heart. When my husband arrived I was in the middle of helping the nurse figure out how to attach oxygen to our son in such a way he wouldn’t immediately shake it off the moment he rolled over. That was the first night of the longest two weeks of my life.
By the time they transferred us to the regular pediatric floor fluid had also been drained off of his lungs. Technically it was considered hospital acquired but I personally think they found it after his heart improved enough for them to actually see the part of his lung behind his heart. We worked with his providers to get some of his routine care performed, including an upper endoscopy, and began to work on his transfer back to the KKI feeding program. They scheduled some testing to get a better understanding of what was going on with his heart. We had been getting a regular heart echo every six months prior to the ICU admission so my husband and I were heavily confused about how this whole situation had happened in the first place. Why didn’t we know our son was at risk for this kind of episode? Why wasn’t he on any medication to prevent this? We had so many questions.
When he was transferred to KKI’s inpatient floor he was vomiting significantly more than he had been prior to his ICU admission. We were repeatedly assured it would get better and KKI was well equipped to handle vomiting. We signed the transfer papers and tried not to worry too much about him. His condition was definitely improving and we had struggled with vomiting before. He was finally able to breathe room air! I was approximately six months pregnant at this point and doing my best not to stress my body into a severe medical issue. For those who don’t know, just being too stressed while pregnant can cause serious complications that can pose a risk to both Mom and the baby. Usually you can handle life stress without major issues, but “son in the ICU”-level stress is pretty bad.