I’ve been trying to find time to write this update for days but last week kept getting in its own way.
If you follow me on FB you may have seen that we had a couple of ED visits last week because Rowan was having an asthma flair. Of course, I never followed up, because I was distracted with the actual hospitalization.
Here’s how it went.
Tuesday, daycare called me at about 1:30 to say that Rowan wasn’t able to sleep because he was coughing, and that his breathing was really fast, and he wasn’t acting like himself. I walked into the room and he was just lying on his nap mat with his eyes open, looking at me. No smile at first. Didn’t jump up. Was breathing fast.
I got him home and did a nebulizer treatment. He perked up for about half an hour, but was still breathing fast. I was getting anything from 55 – 65 bpm, which is pretty fast for a two year old.
Around 6 pm he was still working way too hard to breathe. I called the Duke pediatric pulmonologist on call who suggested taking him to urgent care.
I swear he spiked a fever on the way to urgent care. When we got there it was 101.8 and his o2 was somewhere around 91% – 93%. The fact that he had one reading of 93% is probably what saved us from an immediate ambulance ride to Duke. I always question this practice of taking readings again and again in order to get satisfactory results. It’s something I noticed a lot in the hospital waiting to have Rowan. My BP would be sky high, so they’d have me turn over, and take it again. On one hand, it probably bought Rowan some extra time in utero, but on the other hand, if we’re having to work that hard to not panic, maybe we should panic just a little bit?
But since we did eventually get that 93% reading, we got to drive ourselves to Duke, after Rowan flat-out refused to take the oral steroids. At that point, he’d had four nebulizers and one inhaler dose since that morning, and was only making it about two hours after a nebulizer before he was struggling.
The other times I’ve taken Rowan to Duke it was later and the ED was not as full. This time it was jam-packed. And it smelled like diarrhea. They eventually got him into triage, but since urgent care had just done a nebulizer he didn’t seem that sick. So we got to go wait back in the ebola room catching who knows what. I tried to keep Rowan from touching things. I was actually a little glad when he started feeling worse, because he just snuggled rather than trying to lick the floor or someone’s IV pole or something.
When they finally got us back, it became touch and go as to whether or not they were going to admit him. The doctor said that normally that many nebulizers and such a quick rebound time for symptoms would be an automatic admission, but that she hoped if we could actually get some steroids into him we could avoid it.
It took three of us. Me restraining him, one nurse pinching his cheeks to get him to open his mouth, and another nurse to try to get the medicine into him. He was basically hiding it in his cheeks until we let go, at which point he would spit it out as hard as he could. This is why I now have a cold.
We finally left the ED around 2:00 am, with instructions to return if things got worse.
The next day he was still only lasting a couple of hours after the nebs before his breathing became labored. He was coughing a lot and retracting all over his chest, belly breathing, and nasal flaring. I saw him sitting still with his neck stretched out, which is something I recognize from my own Asthma as not good.
At around 6:00 pm Zach and I agreed that I should take him back to the ED. This time I packed for admission.
I made sure I had a change of clothes for each of us, diapers, wipes, toys, my computer, my phone charger, water for both of us, and some snacks. It’s sort of sad how quickly I can pack what I need to take to the hospital. I went ahead and took all my meds before I left the house.
By the time they finally got us to an ED room it had been five hours since his last neb and he was clearly struggling. He knew the drill. When the nurse came towards him with the pulse-ox he held out a finger. By the end of the night, he would see them with their stethoscopes in hand and go ahead and lift his shirt.
Once we got settled, they gave him an immediate double dose of DuoNeb (albuterol and Atrovent in the nebulizer), followed quickly by a third dose.
All that albuterol made him tachycardic. His resting heart rate was around 210. He was also still tachypneic, with his breaths per minute hanging out in the 55 – 65 range.
At first, Rowan was pissed that I couldn’t find the remote for the tv. But as he started to feel worse and worse he just snuggled up to me.
We got another dose of oral Dexamethasone into him. The one from the night before should have helped for a few days but clearly, that wasn’t the case. We were eventually taken for a chest x-ray to rule out pneumonia.
Back in his bed, lying in the dark and listening to the sounds of the hospital, I felt heat radiating from his whole body. I waited a few minutes, assuming that someone would be by and I could get them to take a quick temp. After maybe ten more minutes he felt like he was burning up, so I found someone to come check. 103.6. Shit. He was moaning in his sleep.
Next thing I knew they were starting an IV to get fluids into him. We tried to force some amoxicillin and Tylenol down his throat but I’m not kidding when I say he has mad skills at medication avoidance.
The joke was on him when the nurse woke him up inserting a Tylenol suppository.
At some point they admitted us and we were moved up to the 5th floor. The 5th floor is also where the ICN is located. Being back at Duke always stirs up tons of conflicting memories. Getting off the elevator and seeing the various window drawings done by pediatric patients. Washing my hands with the soap that smells like two months of my life. All the noises.
Time moves differently in the hospital. I don’t know quite how to explain the feeling. You never get long chunks of sleep. Respiratory comes in, then the nurse to check on you, then the CNA to take vitals. Food deliveries. Blood draws. More vitals. Shift change introductions. Someone comes to pick up the old food try. It is never-ending.
Morning vs night has little meaning. During the first day, the hours move quickly and you suddenly realize you’ve been awake for nearly 36 hours with nothing but the occasional ten-minute nap thrown in.
I did manage a few hours of broken sleep with my body curled around Rowan’s. We kept getting ourselves tangled in the IV tubing and pulse-ox wires as he would shift from my left side to my right, turnover, and crawl around.
The next morning Zach came as soon as Lorelei was off to school. I left for my therapy appointment. On my drive to Raleigh, I wondered how in the hell I had ever managed such a level of long-term sleep deprivation as I did in the months after Rowan was born. I was only a couple of days into it this time and considered that I probably should have canceled my appointment because falling asleep seemed like a real possibility.
But I made it there and then back to the hospital. They were talking of discharging Rowan. At that point, I had not had anything substantial to eat in 24 hours, and Rowan had been nursing like a newborn for the last two days. Luckily, I also know that when they start talking about discharge you have, at minimum, several more hours before you’re going anywhere.
Duke has really great hospital food. Another thing I wish I didn’t know. They will also provide free meals to nursing mothers. Since Rowan was over two, they had to get special permission for me to get a tray, but they did eventually get it straightened out (I actually think they should provide free trays to one parent for any kid under the age of about five. No way could I leave my two year old in the room alone to wander down to the cafeteria). Then I had to wait for the tray to actually arrive. Starving to death at Duke is yet another familiarity.
Right as I was about to dig in, I felt something wet. All those IV fluids meant Rowan was peeing a lot. He had flooded his diaper and now we were both sitting in pee and I had to do something about that before I could eat.
Finally, it was time to go. Rowan celebrated by coughing until he puked all over both of us.
He had a follow up with his ped the next day. I adore this woman. She’s a fantastic doctor, had a preemie herself soon after Rowan was born, and is just generally fantastic. She came into the room and said, “I was just looking at his ED notes and thinking ‘that does not sound like Rowan,’ he’s usually so happy!”
She said the cough would likely last a week or two. He has a pulm follow up next week anyhow, so to just keep doing the albuterol, but start to space them out a little more this week.
And now, other than the occasional cough, he is completely back to his regular self. Running around, singing songs, peeking his head out from behind things and saying, “I see you!” He spent most of the weekend climbing on our boxes from Ikea.
Thanks to everyone who offered help, brought us medicine, drove Lorelei to school, checked in with us, or generally wished Rowan well.
I know this is probably not the last hospitalization for him. A friend of mine who is a doctor thinks I should take him in more quickly than I do. It’s such a difficult decision — figuring out if I’m overreacting or underreacting. If taking him in is worth it, or just going to expose him to everyone else’s germs. If he’ll be poked and prodded and made more miserable only to have them do exactly what we could be doing at home. I literally wrote an entire article about this, and yet I still don’t know.
I’m going to make a list of questions for Zach to take to the pulm appointment next week. I want more concrete explanations of when I should take him in vs waiting it out.
It’s almost like parenting is difficult sometimes.