It’s taken two full weeks, but I’m more or less back to the baseline I was at when I got listed… the day before I got the feeding tube. While I can’t say I’m pain-free, the nerve in the ab muscle that they desecrated with the tube has died off and isn’t sending me over the edge without massive drugs. Still tender and the hole/tunnel itself is very tender, but it’s massive progress that’s unmeasurable compared to when I came out of anesthesia.

After our last steak night I posted about, we ate the two aged bacon-wrapped filet mignon we bought the same day. Oh my! IF that was my last rare steak ever, I’ll be a very happy man it was that steak. I got my wife’s to a perfect mid-well to well-done, just how she likes and mine was delectable. Shoot, I was going to make it the featured image but that’d look weird on the homepage, so enjoy these.

Tube feeding

As a result of learning our lesson with the heavy meal and then tube feeding making me feel awful before we went to feeding tube clinic, we skipped feeding for the steak and for a couple of days while I ensured that Cipro was not an influence on anything leaving my body. We doubled my super pro-biotics that really made a difference for me when we switched brands and I was beyond normal within 48 hours!

Two nights ago, we resumed feeding with 2 bottles instead of 4 (500mL) AND decreased the flow from 120mL/hr to 60mL/hr. I didn’t get more than a couple of winks of sleep but I was only mildly uncomfortable, though my burps still felt like they were coming from well past my stomach. I also felt like the formula was going to come right back out as it went in, but I was wrong, so it was a big win! I was seriously happy.

My biggest issue with the night was a result of the equipment we have. The food bag has a very short tube – like 5 feet long. Once up on the pole and connected to the pump, I have about 18″ of play when I sit in the leather chair in the living room. I didn’t even feel like it was enough to be safe if I rolled over if we pushed the coffee table out of the way to sleep on the leather couch. However, the leather is the other issue: I’ve been a nuclear body heat sleeper my whole life and I just sweat like crazy any time I nap on our furniture.

Before we loaded up the food last night, we took a moment to lower the pole so the pump is <2 feet off the floor so I could sleep on the floor on a blanket and use my fluffy pillow. I slept almost all night! We used 2 bottles again but set it at 90mL/hr so it didn’t finish after 5am. It woke me up at 3:00am beeping that it was done. I flushed my access tube, closed the button, took more enzymes, and slept until the baby woke us up at 5:45am. I didn’t have any nasty burping or feeling like it was running through me, so I’m greatly encouraged to continue night feedings.

Work and business

It was a good and bad week. Lost a client whose site I was working on since January right before my hospital stay that got my evaluation process started. He didn’t want to “get mixed up in my personal business.” I was absolutely floored by this reaction since he was about the 10th client I’d told.

I moved on to the people who do love my work and quickly got their stuff back in motion. I may have overdone it because I felt like I was about to lay down sick at the end of the day yesterday, but I got enough sleep to fight it off. This morning I finished a large set of code blocks and image editing for my favorite client and I feel very accomplished with that feat… so I’m watching movies at my desk now.

To end my week, I got a big lift in spirits. My hosting company, WP Engine, sent me a gift basket from Harry & David yesterday. To receive such a thoughtful gift from the founder, CEO, support lead, and marketing lead, who are all dear friends since 2013… it almost made me cry.

Still waiting

So with everything basically where it was 2 weeks ago, plus 1,000 calories at night and a lot of care to protect my belly from the boys, life’s moving on and we’re just waiting for the call. Every phone ring brings excitement and disappointment. I feel like I’m missing out on everything (like Boy’s first baseball game of the year and I still haven’t seen Logan yet), but there will be plenty of living large soon enough.

It will be best for everyone involved if this happens in April, so let’s do this. I promise to not do an April Fool’s about the call. If we say it, it’s actually happened.

It’s been a rather miserable week that just started to get better today, so for that, YAY! Small victories. Yesterday, we really “embraced the suck.”

The house was a mess because it was Wednesday night church and Boy needed to get out and do something and everyone came home exhausted. There was so much to have done before school and the boys both got up at 5:30am. I was useless. Kristin was just taking a beating from taking care of me, me not helping (lousy loser I am), and taking care of both boys. So I went behind her back and called in the cavalry and Nana was over here whipping the kitchen into shape before we even left for my dermatology appointment. When we got back, the house was clean and I napped and they got stuff done, she did school pick-up, fed the boys dinner, and I made us a nice steak dinner while the boys were upstairs.

I was so darn proud of myself taking care of Kristin just a tiny bit, I confessed before bed that I went behind her back. “Thank you.”

Thank you, Nana. It made all the difference.

“The Tube”

So many of you know from Facebook that the pain from my procedure has been unreasonable. Nurse friends and CFers who have feeding tubes were concerned, so we went to interventional radiology (IR) clinic this morning for them to put eyes on the issue and consult us what they thought the pain issue was… but then last night was horrible.

As part of having an invasive procedure done, I was put on Cipro. We knew before taking my first dose that it does not sit well with my stomach, so I started the anti-nausea meds with the first dose. Amazingly, with my round of IVs before getting listed, I got through all of them with my digestive tract intact. ONE day of Cipro (and the next 2 weeks) ruined me for over a month. I don’t like it, Sam I am.

So that’s where we were the last two nights with Cipro… and we’d had a steak dinner and I was feeling full. All. Night. Long. I started to feel sick to my stomach. I lost so much water overnight from Cipro, I decided to start chugging Arizona fruit punch, then apple juice, then sweet tea. By the time everyone was awake, I was sitting very still so I didn’t lose it. Nothing was emptying out of my stomach and I was filled to the brim with dinner and drink. It wasn’t a fun ride to downtown but I made the most of it with as much hilarity as I could muster.

We walked in the clinic waiting room and I told them my last name. I got a warm greeting by memory and she said she’d go get them to bring me back. We only sat for about 60 seconds in a room of waiting people. We had no idea what they were going to say at IR – “you’re a wimp, this is a painless procedure,” “you’re infected,” “what is CF?” A surgeon in scrubs walked in within about 10 minutes…

Instead, the surgeon agreed the suture was buried in my ab muscle and digging the t-bar into it and causing a lot of pain. “So we’ll cut it today.” There was bruising. There was some tenderness but it wasn’t infected and was healing, though slowly. Then he let us ask him 20-30 minutes of questions about what was going on with the healing, the issues this week, the issues overnight, and future care.

In the end, he suspected that the procedure needle and coring (to get it larger) pierced a nerve in the skin. It can also go through a vessel and take weeks to heal. It’s a crap shoot, plain and simple. I think I also lost the bet on one of the sutures, too. We also learned that the J-tube leading from the button to the jejunum is 45cm long and is the diameter of my oxygen hose: 18fr or 6mm. I thought it was tiny like the pH probe I had for a couple of days to monitor for GERD. We also learned that they replace the whole get-up every 2-3 months, but it just takes a few minutes. Hopefully I only need it replaced 2-4 times before I’m up in weight and have healed from transplant and won’t need it any longer.

After we explained we had the heavy steak dinner because I won’t be able to have undercooked meat (I eat my steak mooing), he said he’d do the same thing. “‘Merica!” I said. He nodded, “‘Merica,” and smiled. We liked him a lot.

Thanks for tuning in for another weekly update. Since our last, I got some new hardware installed in the form of a G-J Tube. If you want to skip to the next topic heading, the long and short of it is that my previous worst medical procedure ever was my ablation catheterization for my tachycardia. I’ve since experienced 10 times more pain than that procedure with this one… and it’s still not gone.

Per normal surgical procedures, I had nothing by mouth after midnight and was scheduled for 9am. We got there at 7am and we were soon greeted by a nurse practitioner from interventional radiology who rocked our socks. Informative, great bedside manner, and quick. With her additional info, we both felt better and worse about going forward, but we knew it was best for my future outlook. She was also quick to tell us I was going to be admitted and had a less than 1% chance of going home that night. She was so right.

When they came to bring me back for the procedure, I had one last chance to inform them that this needed to be performed under general anesthesia unless they wanted a horrible situation back there and was very vivid in my description about what would happen. To my relief, they were already prepping general as we came into the operating room.

When I came around, I wouldn’t have known any different if you’d told me that someone went on a rampage and stabbed me with a dagger and was currently twisting it in my largest, strongest ab muscle (as a chronic cougher, I have an epic ab arsenal). Something was out of control and my ab would involuntarily contract 150%, like it’s never done in its life, and not let go. I was yelling that I was a 40 on the pain scale of 10. Bloody murder. I later found out that discussion happened an entire room later after they’d already sedated me again before my wife was allowed in to see me.

This cycle went on for the next 24 hours. Involuntary contraction, 30 on the scale. 6 hours later, 20… until I was telling them it was a 12. We consulted with pain management and they came up with a combination that worked but left me high as a kite every 3 hours. It still didn’t take the pain away but it kept the contractions at bay 20x better than previously and sedated enough that I slept half the time between doses. As long as I didn’t move, I was okay. I needed help doing anything, lest it contract again.

Finally, on Sunday mid-morning, I was able to stand and walk without anything horrific happening. So we were discharged after lunch and we had the whole evening and most of the day until the boys came home.

Yesterday (Monday), I coughed so hard, I broke a suture to some hardware that takes the pressure off the feeding tube site so it can heal. Pain spike on that side. Today the pain spike is on the other side where all the pressure is now… so the hope is there that tomorrow will be okay. I’m on less than half the pain killers I thought I’d be on when we left.

I’ve been assured by several people that this was an abnormal situation. It looks like it took them two attempts to place the tube and chose to go through an immense muscle, making it an unusual case. I don’t think we made the wrong decision but it’s been a lot harder than I ever imagined – and I always imagine the worst to prepare myself.

2,000 calories overnight

Last night was my first night at home with night feeding. We poured 32oz of high-calorie drink into a hang bag and set the pump for 120mL/hr and it went straight into my small intestines. It’s definitely weird, but not bad. I woke up at least every hour for one reason or another, but not the feeding. Waking up with the energy of an entire day’s eating overnight is pretty cool.

Day to day, minute by minute

We are taking each day step by step and trying to enjoy our time with the boys and keeping the house running. They didn’t do too well not seeing us and bouncing from our house to another, but the next day they were fine. Boy (7), seemed to avoid me until after dinner. He has lots of questions, still. So we talked about it more at dinner. Parker was sad but is all fun and giggles again. I just can’t come close to picking him up yet.

We are both finding it difficult to concentrate on the household stuff and work with every phone call being an adrenaline rush. My wife got her one goal done today and I got a solid 2-3 hours of coding done before my body decided it was done doing that level of concentration. It’s time for another dose of pain killer and prop myself up on the couch to interact with the boys before dinner.

Breakthrough: needed to restart muscle-relaxants to return to hospital levels of pain management. Hope that’s my last dose.

That’s our update for now.

I had my one-month follow up from this post where the doctor gave me a month to gain significant weight or be listed. If you tuned in last week, you know we already bumped things up and were moving forward with being listed and getting a feeding tube tomorrow (Friday) morning.

I maintained stable pulmonary function from the last two visits, so that is good that I’m not declining from these already poor numbers. This is in alignment with wanting to be just sick enough to be listed but healthy enough to weather the storm that is a double lung transplant.

I had a couple more items left to complete my lung allocation score (LAS) for listing, signed consent, got two additional vaccines, and endured two attempts at an arterial blood gas (ABG) draw to determine my CO2 levels. We left for another appointment and when we got in the car again, we had an email that rocked:

You are officially active on the transplant list and your LAS is 38.859!!

With that score and the low number of people listed for lungs with my blood type at TGH, I stand a good chance of a short wait for local organs if there is a good match with a donor. Based on info we have from others we’ve met on Facebook who were recently transplanted at TGH, we expect the wait to be anywhere from days to 2-3 months and be immediately whisked into chaos of the fourth magnitude.

That’s the good news, but we’re struggling

This is a one-time ask. I won’t ask in another post, but the form will be up after posts and the sidebar with a link to here. We aren’t going to focus on money. We’ll let our friends, family, and God do what they do and think is best.

We are hesitant to open up this donation campaign after we received hundreds of peoples’ generous gifts in 2016 for the second adoption, but were encouraged to do so by family who is also willing to assist if the need arises when our funds have been depleted.

Here’s the ask: we are looking to ensure I don’t have any pressure to push myself beyond medical recommendations (because Nana knows I will) with a financial goal of $20,000. Our own transplant fund goal was $36,000 but we think looking at where we are now and how fast transplants happen, with my shop, contracts, and hosting revenue continuing, we can reach that same peace of mind with nearly half that. Thanks for even reading this far.

Here’s the why

Most everyone in the WordPress community knows I kick butt and take names when it comes to putting in the time it takes to provide for our family. I’ve been running our business for over 8 years now and we’re living the dream… but things have always been tight since we started a family in 2012. We’ve had ups and downs but it’s always just what we needed, provided just in time before disaster. Drain savings, pay it all back, build up a little margin, something breaks, drain savings, pay it back, you get the idea.

We currently have a small emergency fund and we fully expected that my work-from-home business would allow me to work right up until transplant. That no longer seems to be a reasonable expectation. We felt that we were entirely prepared for a quick medical leave after surgery but not any decreased work beforehand, which looks like it could be weeks or months waiting on the transplant list.

I am currently pushing it to see some semblance of normalcy but just hitting about 33% of my usual productivity. For my health, I need to back that down to about 25%. Work 2hrs/day, rest with quality time, and eat for strength, and nap a lot as my oxygen saturation remains lower than normal. There is work waiting to be done – it’s a matter of having the energy and concentration to complete the contracted work.

Kristin was willing to get a job to make up the difference but we and other family members shot that down because she is my support system and taking care of the boys. If she leaves home to work, I am left caring for the boys, doing school car drop-offs, and numerous trips upstairs with our toddler.

I am still focusing on my WordPress theme and plugin shop, GenesisThe.me, and have two products for sale with two ready for launch by the end of March to supplement the client work and hosting recurring revenue, but there will be a shortfall with continued work hours at this level.

We don’t know when or if I’ll completely have to stop working, if that will involve being in the hospital on a ventilator, or if it will be a smooth recovery where I’m out in 3 weeks or 6-8 weeks. I’ll have physical therapy for at least a month, twice a week, which is draining according to friends… and I can’t be left alone for 3 months. That’s what we’re facing between now and being 100% health.

Thanks for listening and please feel free to share with other people who are interested in our story, if so inclined. We’re so thankful for such an amazing team surrounding us and lifting us up daily.