For those who are interested, I thought I’d talk about what our days, weeks and months look like, now that we’re in protective isolation with Felix at home. (For anyone who’s new around here, Felix has severe combined immunodeficiency, and we are awaiting gene therapy in the hopes that he will someday have a functioning immune system.)
(Entrance to Felix’s room. On the shelf: disinfectant wipes, masks, gloves, calculator for calculating his formula intake. On the wall: whiteboard for tracking his feeds, hand sanitizer dispenser. Notice tape on the floor.)
Felix lives in our main floor living room — what used to be Lydia’s place space. He doesn’t leave that room. The bedrooms are upstairs, so we moved Lydia’s double bed down to Felix’s room so we can take turns sleeping near him. (We may not be able to co-sleep as we wanted, but we’re not going to make him sleep alone!)
We moved our couch to create a barricade, separating Felix’s room from the kitchen and allowing a path to the bathroom. We also put down a strip of tape on the floor as a marker. Nothing goes past that couch/tape without being sanitized first. This is Felix’s space, and everything inside it must be kept as sterile as possible. The tape also reminds us to sanitize our hands before entering.
We also have hand sanitizers installed around the room, so we can sanitize before we touch him. When possible, I prefer to wash my hands in the bathroom, where we have a paper towel dispenser installed (since towels can harbour bacteria). (We are composting the paper towels to make it a little less terrible for the environment.)
Most of our day is pretty typical for a family with a new baby. You know — feeding, diaper changes, cuddles (but no kisses). The biggest oddity is simply the fact that we never take him anywhere.
Then there’s the medical part of every day, which we have quickly gotten accustomed to. Every day we:
- give him his oral meds — a preventative antibiotic. (I know. Antibiotics. But after everything else we’ve done to him this is the least of my concerns.) Since he still has the NG tube, we almost always give it to him through that so he doesn’t have to taste it.
- take his temperature. A fever is one of the earliest, most obvious signs of infection.
- change his IV bag (This is Ben’s job)
- sanitize the room, including the floors. We have disinfectant wipes we use to wipe down his play mat, light switches, toys, door knobs, etc. We use a steam mop to sanitize the floors.
- make his formula. I make a 24-hour batch every day and keep it in the mini-fridge that’s used exclusively for his formula and medication. His formula is this nasty, processed, powdery, amino-acid-based crap that I have to mix with sterilized water. Making the formula involves first sterilizing ALL the equipment in boiling water (whisk, spoon, measuring cups, scoops, etc) and the bottles in a steam sterilizer. I don’t do as much cooking anymore because making his formula every day is as much work as cooking a gourmet meal. And I need to keep the counters perfectly sanitary.
- feed him. Lately, he takes almost all of his feeds orally, which is so awesome and exciting. It takes about an hour, though, every 3-4 hours. We just top up with the NG tube every once in a while to make sure he’s getting enough calories.
As I mentioned above, every night Ben and I switch off spending the night in his room. Back when he was exclusively tube-fed, he often slept through the night (the nurses would just come and get the feed started without waking him). But since we’ve transitioned to oral feeding, Ben and I have actually trained him to wake up at night to feed. (He doesn’t take in enough calories during the day alone). He usually wakes once or twice to feed, which we consider positively dreamy (after Lydia, who woke up 3-5 times a night for the first two and a half years).
- Twice a week (Tuesdays and Fridays), I give Felix his injection in his thigh. Ben holds him. I hate it, but it’s not as bad as I expected. All of us have forgotten it ever happened within 90 seconds of the shot. And it’s the number one thing keeping him alive and well.
- We usually have to put in his NG tube at least once a week because he somehow manages to pull it out. This, by contrast, is absolutely horrific every time and goes against every instinct I have. For better or worse, though, I’m getting increasingly numb to his screams.
- Twice a week, Ben changes Felix’s IV tubing.
- Once a week, we take the two-hour-long trek to the hospital for his clinic visit.
Weekly Clinic Visits
Clinic visits are the absolute worst.
The drive sucks because we’re not supposed to turn on the fan or A/C or open the windows. He’s supposed to stay under a plastic cover. We always break some of the rules because these conditions are unbearable. Somehow, his IV pump always acts up and we end up scrambling to try to fix it, terrified that his line will clog up and he will need to get a new one surgically implanted. Feeding in a moving vehicle is difficult to manage in a sanitary fashion, especially if we end up needing to use the NG tube.
The actual visit is always extremely traumatizing. It always involves me pinning down my baby while they do something horrible to him. He screams and flails with abject terror in his eyes until he can hardly breathe. It’s a nightmare. The last time, the sheets ended up spattered all over with blood as they tried to get blood from his heel because his central line clogged up. (They managed to unclog it later.)
It happens in a dim isolation room with no windows, which doesn’t help. It’s a cold, stark, medical-looking room where strangers in masks walk in and out and hurt him.
Then we drive home, picking up fast food on the way because he can’t leave the vehicle.
BUT it’s only one day a week. Once we’re home and comfy again Felix is back to his smiley, goofy self.
Lydia visits once a week. We even have her sleep over. It’s difficult because she can’t be in Felix’s room — she can only peek over at him. And Ben and I can’t ever be with Lydia together — we have to take turns. BUT: it’s infinitely better than in the hospital when we had to be in separate buildings.
Her visits are the highlight of our week, though. We walk to the park, read books, swing in the back yard, and play downstairs where we’ve set up a new play area. We do science experiments, play with play-dough, and practice the phonetic alphabet. She’s gotten so independent, she will happily play by herself downstairs for long stretches of time. It’s heavenly, just like old days.
We also visit her throughout the week at my parents’ house, too, and usually have Sunday lunch together.
She’s still having a great time living at Grandma and Grandpa’s. She spends her days helping in the garden, terrorizing the kittens, jumping on the trampoline, dancing with her aunties, and playing hide-and-seek with her uncle. And generally just wearing everyone out, like she used to do with us. :)
Next, I’m hoping to give you an update on our gene therapy plans. Thanks for sticking with us!