April Week 2 Update – Stable but More Oxygen

First of all, I wanted to thank you all for your incredible generosity to my medical leave fund. It’s been a really significant relief of several burdens, including stress from my to-do work list, earning enough for our house and business expenses, and guilt from napping when I’d normally be working. Interestingly, unlike our adoption donations, the vast majority of help has been $25-$50 donations with many, many people I don’t even know who they are. Simply many giving people from the WordPress community who are giving to a fellow contributor to our livelihoods.

At the time of this publishing, the count-up timer reads exactly 25 days, 11 minutes on the active list.

Despite all of that napping and resting, I finally finished (after more than two years of delays because of client projects) the first theme I started for sale. It’s actually the theme this site is running on, so if you run a self-hosted WordPress blog and like how this site looks, you can have the theme on your site, too. So for those family and friends who know me from years ago but are far away, that’s what I do now. I’ve been running my own WordPress digital agency for over 8 years. I’ve been spending the last 2-3 years transitioning away from client work to products and educational courses in long-term preparation for my transplant and the unpredictability of life without an immune system afterward.

Yes, I’ve been planning for this time for years… but life threw us so many curveballs (and blessings in the form of two happy and healthy boys) I just couldn’t get it all done in time.

Family and friends

We’ve had lots of help at home recently. Nana continues to come over to clean and cook us a meal or two per week, as well as periodic school runs, watching the boys, and staying until bedtime so I don’t have to baths or bedtime routines. They did some major de-cluttering of our one-car garage last week. I can now dump my wheelie O₂ tank out the passenger seat and pull it alongside the car to the door now.

The weekend before this, Nana and Papa got cedar flowerbed edging and put them in and re-did our flowerbeds. With Papa’s recent pressure washing of our walks and drive, we have curb appeal for the first time in our 9 years here. They’ve also deep cleaned both of our upstairs bathrooms with bleach and caulking so there is no possibility of mold to get to me.

This weekend my dad hung the entry light we had in our apartment for me. I gave it a shot a couple of years ago but it was a tough situation. It took both of our brains to figure it out because you’re working blind to get the screws into place, but he finally got them in and we love it. Then we did a Home Depot run for one more section of garage shelving to finish getting stuff off the floor and mini-fridge. He drilled all the holes I marked and sawed the boards because we got tired of waiting for the board ripper person to come help us at the store. My wife immediately filled the shelving up with the outdoor toys and beach toys.

Our church family keeps asking how to help but we’re truly at a loss pre-transplant. Our moments of greatest need are getting ready in the mornings and getting the boys fed and to bed, but everyone has kids to do that with their family, so we’ll probably be holding off on their help until after I get the call and the boys need meals. We’ve already got my wife’s meals planned for the hospital and Nana and her sister-in-law will probably be her main source of food while she’s still tending to me so much when I come home. Transplant experiences after discharge vary so greatly, we really don’t know what to expect as far as my abilities, restrictions for healing, or my pain/anxiety/hallucination levels.

We all made it to both hours of church yesterday. I learned walking in that 3L/min is NOT enough for walking that distance any longer. I used 4L to walk to class for second hour. Still not enough. Walking out, I bumped it to 6L and that worked, but it’s really blasting up my nose at that level and feels like a hot poker. I suppose it’s something to get used to. We took a walk today and I used 6L again and did pretty okay for my half-mile.

Oxygen, antibiotics, and feeding tube

In all of this going on, I’m pretty at ease with the vast majority of it. That’s definitely an advantage to be had from having so much advance knowledge this was the ultimate “treatment” for my cystic fibrosis. That said, some things are getting old quickly or are some level of frustrating and discouraging. I need a little rant, partly because my family is done hearing it and because it shows that I’m okay with the big issues and that it’s the little things now that are getting to me.

First to resolve is getting off this 10-day round of antibiotics. I’m getting up at least 3x per night and not getting enough sleep as a result. It’s really messing with my night feedings.

We ramped up to full volume and rate on my feeding last night and it’s really not comfortable. It ran from 8p until 4:20a and I felt uncomfortable and was burping intestines for an hour after waking up. I can’t adequately convey how much I hate that. That didn’t happen with 2 cans of formula and it doesn’t happen with 3 cans at full rate so it finishes early enough to keep sleeping after I disconnect and flush the button. My most recent frustration was a discovery in the car on Friday. I can’t cross my arms while relaxing with the feeding tube button placement. Unless it’s completely touchable and movable at some point, it’s out of the question.

Our home concentrator runs 24/7 while I’m home. It’s supposed to be rated to 5L/min. If we leave and come back, turned on all the way, it gets to 4L for a while, but slowly creeps down to 2L, which is too low for me now. I’ve been waking up with headaches again. We last turned it on after church yesterday and It’s now right at 2L. So we’ve got to call and see to getting a new unit. It’s silly to mention this with the litany of real issues, but we’re all the way done with this 50′ hose. It snags on corners, stools, pillows on the floor, kids’ feet, gets pinched in the baby gate, has to be maneuvered to go up or down the stairs, and is an extra tube at night with the tube feeding. The call can’t come soon enough.