We’ve been home for a week now.
We are SO, SO HAPPY.
It is amazing. We love everything. The first morning back, I almost cried with joy over being able to use my chef’s knife again. And my cast iron pan! And when I didn’t have any onions for my scrambled eggs (Eggs! Farm-fresh eggs!) I ran outside into the sunshine and grabbed a handful of fresh chives.
After five months of living in a sixth-floor hospital room and eating cafeteria food, it was heaven.
For days, Ben and I would just rattle off all the different ways life was wonderful. A whole fridge of food all to ourselves! Coffee, any time we wanted! No elevators! No key cards! Comforters on our beds! It was like we’d just come home from a third-world country.
It was also a ton of work, though — getting everything set up and learning what we needed to know to care for our special-needs baby. We got home at 5pm on Monday night and didn’t stop working until midnight. We got up the next morning and repeated the same thing for the next three days, hardly stopping to eat and/or relax. (It’s a good thing Felix is such a happy camper. We pretty much ignored him for the first several days as we got everything ready.)
We had to set up a room for him on the main floor — crib, change table, etc — and set everything up for constant cleaning and sanitizing. We installed hand sanitizer dispensers and paper towel dispensers. We organized all his medical supplies. We set out gloves, gowns and masks, for ourselves and the nurses. We had to learn how to use and change the bags on his IV pump, how to sterilize his bottles, and how to steam-mop the floors. We had to find clothes for him, now that the hospital isn’t supplying sleepers. Nurses came and we had to sign paperwork.
And we had to move back into our home. Unload the van and unpack all our suitcases after almost half a year of being away. We still had Christmas presents to find places for.
But we are just so happy to be home. Especially now that we’re settled in.
And thank goodness, Ben’s mom and sister cleaned our house floor to ceiling before we arrived, and our friends filled our freezer with frozen meals. (We are blessed beyond measure in the friends and family department.)
The changes to Felix’s care have been so great for all of us. Instead of an IV pole, his IV meds are contained in a little bag we can wear like a purse. We can take him everywhere in the room without dragging a heavy wheeled machine around.
A nurse comes once a week. Not every couple of hours.
We still use the gowns/gloves/masks, but only on an as-needed basis. If we’re just talking to him, we’ll keep our faces bare; but we’ll put on a mask to pick him up. (I cannot be trusted not to kiss him otherwise.) We only put on gowns if we’ve just come in from outside or a public place. We only wear gloves if he’s likely to suck on our fingers or if our hands are getting too dry and cracked from all the washing/sanitizing.
It feels amazing to touch his skin with our bare hands again. The squishy little nugget!
We can make his bottles ourselves and take them out whenever we want. It’s fabulous. No rigid schedule anymore. If he’s not hungry at 4pm we can wait an hour. Or we can take it out early. No force-feeding or waiting unnecessarily, just to stick to their arbitrary schedule.
The only downsides to making his formula ourselves are (1) it’s a LOT of work. We have to sterilize everything that comes into contact with his feeding, and (2) I HATE it. It forces me to actively face, every day, the fact that I can’t breastfeed.
(Tangent: I HATE, HATE, HATE making his formula. HATE IT. I realize they did it for Felix’s own good and that my breast milk almost killed him, but I will always and forever subconsciously hate the medical community for forcing me to end one of the most meaningful, satisfying, and enjoyable experiences of my life. It was just awful, what they did to me. I HATE THEM.)
Being close to Lydia is so, so wonderful. We’ve seen her almost every day since we’ve been home. She gets funnier and smarter every day. Playing in our back yard together for an hour feels like a vacation in paradise.
Felix loves being home, too. He spent he first couple of days in awe of his surroundings. He was fascinating by everything. The light fixtures! The animals on his bedding! The mirrors on the wall! He is a marvelously happy little boy.
Again: it just feels SO GOOD to be in our cozy home. We’ve always been homebodies and appreciated what we had, but this experience has intensified our love. Which is a good thing, considering we will likely be living in isolation here over the next year. Which brings me to . . .
What’s In Store for the Future?
Our journey with Felix and SCID is not nearly over. We’re just home temporarily until we can take the next big step.
The goal is still gene therapy L.A. in July.
Closer to that time, Felix will have to undergo an intense series of tests to make sure he is eligible. As I’ve mentioned, it’s an experimental therapy and Felix is one of fifteen patients tentatively enrolled in the clinical trial. (You can learn more about gene therapy here.)
It’s a terrifying prospect — bone marrow harvest, chemo, genetic modification of stem cells, transplant — but still our best hope for him, as far as we understand it.
Our time in L.A. should only be about 7-10 days. After that, we expect to spend another month or so in hospital back in Ontario to have Felix closely monitored.
After that, it’s hopefully back home in isolation for another 6-12 months.
If all goes well, Felix will hopefully be able to go out into the world some time in 2016.
And hopefully I can kiss him again for the first time since December 4, 2014. I’ll be counting down the days.
I want to thank you all again for your prayers and support. We couldn’t have done this without you.