Happy news in a time of COVID.

Well, I am writing to you from home, where we – like everyone else – have been hanging out full-time. Aside from twice daily (at least) FaceTime chats I haven’t seen Scott in 11 days. Safe to say we miss him A LOT!

Though the hospital being on lockdown, and the demand that we social-distance has felt like bad timing, it has actually been good in a way. Scott had been feeling REAL bad until Thursday, with brutal mucositis keeping him on some pretty hardcore pain killers. This ‘Dilauded’ trips him out…and while it takes the pain away, it also brings on some wicked hallucinations and wacky dreams. I have gotten text messages from Scott about conversations we never had, or events that haven’t taken place. His chat groups with his buds have also received some very bizarre messages it seems. It’s easy for me to be at home saying that he’s better off being doped up than not, but with the numbness obviously comes those other side effects that aren’t easy to handle while you are totally isolated in a hospital room. But if there is a time to be so out of it that he likely wouldn’t even realize he had visitors, its been these last five or so days.

He had a feeding tube put in as well, because it is so hard to eat/keep track of calories/have any interest in food while feeling like garbage and losing time throughout the day. It means his dietician knows that he is getting the basic nutrients he needs through the tube, and additional shakes/snacks are a bonus. Since I haven’t been able to visit and bring food like I normally would, I haven’t had to be as neurotically obsessed with accidentally contaminating his meals. Sterilizing the cups/tools/containers properly, washing the peel of a banana before peeling it, re-washing the counters so super throughly after and before prep…etc. It’s a (selfish) silver lining of lockdown.

As of Thursday, Scott has officially engrafted and is back to building up an immune system – one little neutrophil at a time. He has started to feel better – able to open and close his mouth more easily, and swallow properly. HIs Dilauded has been reduced. He’s on his way to feeling better, but its definitely baby steps that sometimes involve two forward, three back. But progress is progress. He’s getting his sense of humour back which is always a good sign!

We hope that he will be coming home early next week!!! It should go without saying that I want Scott home and healthy more than anything! But I’m sure you can understand why I am a bit more anxious this go round, with everything happening – pandemic and all. After his first transplant I was so nervous for him to come home because keeping germs away with three little kids seemed impossible. HA. But now with the extra risk of transmitting COVID and keeping our kids home full time, I feel like I can’t possibly keep him as safe as his positive-pressure hospital room, behind sliding doors, in a locked down ward. But we will try, right!! Once he gets home we will be isolating for another couple weeks, so it’ll be a while before we spend any time with friends and family. I had someone help with our yard the other day, and I told the kids to stay away from “Fred” while he was working, to which Harrison replied “but Mommmm we haven’t talked to anyone in real life in daaaaays”. Ok, so I guess we’re all feeling it.

Thanks to those who have reached out about Harrison. He and I have been working on managing his fear and obsession with germs. We are doing a lot of talking …. like a lot. He has taken responsibility of spraying touch-points throughout the house with Lysol morning and night which seems to empower him to have control over the situation. He doesn’t realize that we have run out, so I am going to need to figure out a new solution – fast! Harrison’s #1 annoyance: his little sisters who STILL haven’t mastered washing their hands effectively, without he or I supervising. It is pretty annoying.

I’ve been getting lots of sweet “HOW ARE YOU MANAGING?” messages. Overall, the time at home with the kids has been good. I won’t pretend that it’s magical, or that I am cherishing every moment, but we’re getting through it pretty well, all things considered. There is a lesson for us in all of this, and I am slowly figuring out what it means for me… Can’t lie, there have been a few “HOW CAN YOU POSSIBLY BE HUNGRY, YOU JUST ATE! It’s only ….. oh, ok its 2pm… sooo chicken fingers?” and “oh you’re bored? Nothing to do? Cool, so let’s go grab all those toys and figure out who to donate them to!!” but from the looks of IG and FB, I am not alone. Luckily I am used to working from home, so feeling isolated isn’t a big deal.

No schedules, late nights, scattered meal times and sleeping in mom’s bed is coming to an end soon though, because there will need to be a lot more order/quiet once Scott gets home. He will have a period of getting used to being home with us and without a nurse, which is not easy on him.

For now we prep the house as best we can to bring Scott home to clean, safe space. Ducts are being cleaned as we speak, filters are being changed and our bedroom will be set up and ready for him to self-isolate. Thank you to everyone for your continued support. While you are all dealing with COVID in your way, you have still continued to check-in, ask for a blog update or just offer a virtual hug. Thank you 🙂