It’s around 4:00 am in Children’s Hospital of Wisconsin (CHOW) in Milwaukee. I know it’s somewhere around 4:00 am because my daughter Samantha has a new nurse. I hear wheezing in the background…and the SpO2 saturation alarm has gone off again. The nurse walks around Sam’s bed, resets the alarm, and reads off the display. I roll over so I can better see the situation, but my mind is still fuzzy with sleep.
The nurse is checking Samantha’s vitals now and making sure all medicines are in place for the first of her three daily treatments that will take place in a few hours. Normally, at home, Sam only requires two treatments a day in line with her care plan. She’s in the hospital for an exacerbation, though, so the doctor bumped up the number of treatments. If things aren’t better by morning rounds, they’ll probably go to four treatments a day.
Samantha is barely aware that all of this is going on around her. As I listen and watch from the uncomfortable bed, Sam sleeps. Her body is so exhausted after not sleeping well for days on end. She awakens just long enough to eject a very empty, hoarse cough. The wheezing stops for just a few minutes, but comes back soon.
I recognize the nurse from a few days ago, but I forgot her name. I always forget their names, despite the fact that it is they who slug it out in the trenches with us. They deserve better than my forgetfulness. Unfortunately, while I want the staff to treat my daughter like she’s their only patient, I fail to treat each nurse with the same level of respect.
My goal is always to let them do their work and pretend to sleep, but I have to go to the bathroom. So I get up. The bed is less comfortable than a Navy rack, and that’s hard to accomplish. I’m grateful though, because even though it’s harder to sleep through the night, I’m more easily awakened to help if Sam needs me. I nod to the nurse and slip into the bathroom. She’s gone by the time I get out.
The doctor told me to expect this. At least that’s what I remember him telling me at the Naval Hospital San Diego a little over a decade ago. We had been ushered into his exam room on the 22nd of December 2005, a mere two weeks after Sam’s birth. My wife and I had some idea that the meeting might be about cystic fibrosis, but suspecting the reason didn’t prepare me for the words, “Your daughter has cystic fibrosis.”
In that initial meeting, he told us that Sam had been tested as part of a newborn screening. We then did a sweat-chloride test, which verified what the newborn screening suggested, and that was that. We had a baby with a genetic disease. After filling out a million forms to sign up for the national Cystic Fibrosis Foundation database, we took our baby back home and restarted life from a different perspective.
Our nurse is gone and the whirring of the IV machine is the early morning’s only accompaniment. A long look out our 12th floor window at the edge of Milwaukee tells me that the city is just now starting to come to life. Most of the hospital staff will be arriving over the next few hours, but for now the cars are pretty well spaced apart in the parking lot. At some point in the afternoon, my wife will be traveling from our house in North Chicago, Illinois, where we live near the Navy base. We switch off every day or two, depending on how long Sam is going to be in the hospital and what the other two children have going on. Thankfully, I’m afforded leave so work isn’t an issue.
I miss my other kids when we spend so much time apart, shuttling in and out of the hospital like this. Our oldest, Timothy, was two when Samantha was born. I had what I wanted and was done! My position was further grounded when we found out that Sam had cystic fibrosis and that our next child would have a one in four chance of also having CF. It was years later that I would become comfortable with having another child; just in time to find out we were pregnant with our third. Surprise! And what a happy one it’s been. Hannah is a carrier of CF, but heterozygous, meaning she also has a good copy of the gene that causes CF. She’s like her mother and father in that respect.
We don’t know if Timothy is a carrier for cystic fibrosis. All we know for certain, based on sweat-chloride testing, is that he does not have the disease. For some reason, we didn’t get Timothy tested genetically when we first found out about Samantha. Now that he’s older, we’re just going to wait until he wants to be tested for himself.
We don’t normally think of ourselves as a special needs family, but as a career Navy Sailor, I’m automatically labeled as such because of the Exceptional Family Member Program (EFMP). EFMP nominally ensures that family members will be taken care of and that the issues at home will not hamper the service member’s career.
Outside of the fact that the Navy has placed us in the Category Five code, and the quarterly checkups, and the numerous notes explaining to teachers and school nurses about CF, and the meetings with my chain of command to explain why I need some time off to go to this appointment or that one, and the unending treatments, we don’t think of ourselves as a Special Needs family. Ok, so maybe we should.
Yet we try to keep everything as normal as possible. Most CF parents do the same. Our kids go to school, we go to church as a family, and play with friends down the street. We’ve been to Sea World and Disney Land and we have traveled around the country. Our only stipulation is that Sam’s treatments, which include several machines and various medicines, go with us.
Back in the hospital room, I’ve fallen asleep and awakened again with Samantha half way through a treatment. She’s bothered by the respiratory therapist. I am too. He’s rough and demanding, and not in a “you can do this!” sort of way. I know that’s a poor attitude to have, but I’m tired and he’s not treating my daughter the way I want him to…like she’s his only appointment. I give it a few more moments before stepping in to help. I know the treatment is an absolute must. Regardless of the ogre giving the care, my daughter needs it, so I coach her through it. It’s probably a sign of codependency on my part. Oh well. During a break in the action to switch out medicines, I order Sam breakfast. A few minutes later we’re back at it with a different inhalant.
Treatment over and Sam has moved on to breakfast. I’ll be leaving to get something to eat for myself in a few minutes. Right now I’m engrossed in an episode of Sponge Bob Square Pants while Sam is already thinking about her Minecraft community that she’s involved in. She’ll probably play that for the better part of the day while she’s stuck in this prison. I give a lot of leeway in the hospital.
Her breathing isn’t as pronounced as it was during the night, but she still has a slight wheeze, and she still clears her throat even though it has nothing in it. The attending physician pokes her head into the room and asks me to come out to talk about the results of the night. I’m grateful for this too as it makes me feel like I’m part of the process.
My wife texts me as I’m leaving the room, telling me that she’s on the way with Sam’s brother and sister. I text back to see if she has any questions for the care team.
“Good morning, Dad,” said the attending physician as I put my phone back in my pocket. “How was the night?”
For just a few moments, the attending and her team act as if my Samantha is the only patient in the hospital. “She had a lot of wheezing,” I said, “and her O2 saturation alarm went off a few times.”
“Ok,” said the attending. Then to the rest of her team, “Let’s talk about today’s plan.”