From the Blog

Viral Gastroenteritis and CF

I went to the hospital yesterday. Diagnosed with viral gastroenteritis. This photo was from leaving across the bridge from TGH on a beautiful autumn night.

Okay, pick yourself up off the ground. Here’s what happened.

I woke up with a wicked headache. Massive. 10 out of 10. Got through my treatments, but wasn’t feeling well enough to eat breakfast, which I attributed to the headache. Not too long after I got to my desk, I started getting heat waves, cold waves, started sweating, and had to sit very still to avoid ruining my keyboard with any sudden surge from my stomach.

I went back downstairs and got under the blanket on the couch. Then I threw it off and turned on the fan. Back and forth. No fever, though: 97.9, completely normal for me. I then realized I’d been to the bathroom about 6 times since dinner the previous day, so I sent Sue an e-mail about taking some anti-nausea meds we had laying around. They wanted me to come in for a GI x-ray to be sure I wasn’t blocked up, given my extreme nausea.

She called in an Rx for an anti-nausea med. Beautiful went to get it and I proceeded to pass out from trying to not puke. I e-mailed my clients for the day and told them I was out for the day. I also told her about my tender neck/throat and she said she’d let the doctor’s see my e-mail as further symptoms.

At clinic

Then my temp spiked to 100.9 and Sue’s plan changed to be seen by the doctors instead of going to x-ray. I hadn’t lost any considerable weight (2lbs) since clinic, had 98% O2 sat, but a 125 pulse and 100 fever. On our way to my room, we had a nice surprise seeing Kelli Stevens, the wife of another CFer at clinic. She’s on the cardiac transplant team, so she was there because our clinic is for both cardiac and lung transplants. He had his lung transplant over Christmas last year, so when we brought gifts to ICU, we had to leave them with the nurse.

Anyway, the first thing the doctor said as he looked in my mouth was that it was a wicked case of thrush. I’d explained in an e-mail earlier to Sue that my entire trachea has been sore to the touch since Friday (going on 5 days) and the doctor said that’s why. So, for those of you on Advair, gargle and spit. Dont drink, swish, and swallow – that’s how you get thrush all the way down your tract.

He said I just looked really dry and I felt really weak and helpless. He ordered 2L fluid immediately and stay on a plain, boring diet until the nausea and runs went away. Well, any time you want to get back home, things take forever and the fluids proceeded to take nearly 2 1/2 hours to go in. At least the clinic staff are epic compared to the main hospital staff. They brought me apple juice and a blanket and showed Beautiful the clinic food pantry.

We rolled out around 6pm and headed home to be a lazy bum all night.

Temperature control, please

Since I’d been in clinic, I needed to take a shower. I was shivering coming home and going upstairs, so I got the space heater out of the bathroom closet and cranked it on 1500W high and waited a few moments. Time to get out my long-sleeves and sweatpants. I ate some applesauce, drank Gatorade, and watched the Moonshiners marathon before the season premiere, which I fell asleep as the new episode started.

It was a complete wasted/wash of a day.

Summary

  • viral gastroenteritis caused “bathroom issues”
  • “bathroom issues” caused dehydration
  • dehydration caused
    • headaches
    • nausea
    • dizzyness
  • not swishing and spitting after Advair caused very bad case of thrush

Healing from our Loss

The remains of a good memoryThe first topic in our foster/adoption training was to learn to recognize and deal with losses in our lives and in others’ lives. We have just suffered a great loss and Saturday evening and Sunday morning it felt like a very real, tangible, permanent loss.

It truly felt like Boy had died. The pain was 10x more than losing Grandpa last month. Two catastrophic losses in 30 days was almost too much.

We came home Saturday from dropping him off for reunification and I saw the piggy bank on the floor of the living room – the last thing we were playing with – and I completely lost it. He hadn’t even felt like eating any of his last 4-5 meals (all his favorites). I did not know it was possible to hurt so much.

A day at the park

We had previously accepted an invitation from his parents to go to the park with them as an extra visit for them. Now, with the reunification, it was usย getting the extra visit. We think he really enjoyed having his 2 daddies and his 2 mommies playing with him on the playground, but it was very clear that he was tired and confused. His eyes looked dead at one point, but that one point was over an hour past his naptime on a very tumultuous day.

I didn’t eat lunch before we had left, didn’t have anything except 2 Pepsis and a small bag of chips at the park, and when we got home I experienced complete meltdown #2 – our breakfast bits that neither of us felt like finishing were still on the table. Some on his toddler plate and some on my plate. Bam!

The day after

Toys no moreI e-mailed the other light tech for church and asked if he could take my shift in the morning, knowing I was going to be in no shape to have questions of any kind. He was and he did, so I slept until 9am. When I came downstairs, Beautiful said his dad had e-mailed that he was up at 6am to be awake when Boy got up, told us what they had for breakfast, and some idea of the plan for the day. Later, he said they went for a walk and that they picked up sticks and leaves in his bucket (one of his favorite things). After dinner, he told us what he fixed for dinner and that he was having a bath under his mom’s watch and that he was going to read him a bedtime story that he wrote for him!

Those e-mails lifted our spirits more than is communicable and we went to bed much, much, much less sad. I even watched the whole Sunday Night Football game with the Broncos when I didn’t have the spirit to watch an Ohio State win the day before.

Life goes on… but are you normal?

We are slowly moving on with our day, but it will be a while before we are back to normal. Evidence of him is everywhere – even a handprint on Nana’s refrigerator that she didn’t have the heart to clean off. I shaved my hair yesterday and found a ton of his hair still in the clippers from Wednesday, so we got some tape and collected it for a scrapbook page.

But! But let’s be respectful here – none of this talk about “oh, you’ll have another one,” or “they’ll be calling you in no time for another placement.” Excuse me, but are your children and pets THAT expendable that you can just replace them with another? Whoever told a grieving parent “at least you have 2 more” or “you are young – you can have more?” Yeah, it happens, and those people should attend some mandatory training.

That’s why we are staying locked up for a few days… because of people who say things like that… because they’ve already said such things to Beautiful on Facebook, including other foster parents. The next person who says that gets unfriended in real life, okay? Think before you speak. He was our only child for 6 whole months – 1/6th of his life. He will not be forgotten.

The Hobbitfoot – There and Back Again

Sunset TrekSorry about the Tolkien-ish title. I’ve recently finished re-reading The Hobbit for about the 5th time and am eagerly awaiting the movie at the end of the year. I suppose I owe you an explanation of the title, eh? Hi, I’m Fatboy and I have Hobbit feet, but that’s not the point at all. “There and back again” is the point.

My friend, Mark Mann in Kansas, innocently enough mentioned needing good results like my clinic visit on Friday to keep us motivated. I don’t disagree with that at all, rather I’d like to expand on it. Six years and one day ago, I married my best friend. You all know her as Beautiful. I know her as Wonderful, as well. See, I was pretty darn sick the year we got hitched. My health was on a pretty good decline, then I got better for a year or so, and then it was back to a severe infection and IVs every 6 months or so.

31.5 months ago…

Then I started this site and made myself into CF Fatboy. That was 31 1/2 months ago as of this writing. Two and a half years since my last round of IVs – a record going back… probably forever, because there used to be this thing in my life called “tune-ups,” which my doctors don’t believe in. I think we can safely say that we whole-heartedly agree with their school of thinking now, though we did have our reservations a few times.

So, there we were decompressing our long anniversary day last evening when I mused: “I’m healthier today than I was the day we got married. Go figure.” We are literally turning back the clock. Sure, I tire easier and need more rest, but I listen to her and my body to chill it and with my fat reserves, I weather my colds with extra sleep, less work, ย and ensuring I’m do 100%+ of my treatments.

I also graduated college 29 months ago and started my business 45 months ago. The latter definitely initially hampered my health, as I worked like a maniac insomniac workaholic. I barely graduated that final semester without finals week landing me back on IVs, but the next month, we went to a cabin in TN for vacation and I gained nearly 10lbs and did every.single.treatment. Every time. Even in the hotels.

Good results motivate

My good results do motivate me, but bad results give me permission that I sometimes don’t otherwise give myself to cut back. I cut back since last clinic with the exception of having to save up for a trip to Ohio in July and again in September. Okay – it doesn’t sound like I cut back, but I did for 70% of it. Now these good results have my quasi-psychosomatic brain feeling better than I did Friday at 6:30am.

So, yes, I have hairy, wide feet and a huge LOTR fan, but, like Bilbo, I’ve come back from where I’ve started: relatively healthy as in my youth.

Happy Anniversary – Six Years of Awesomesauce

Today marks our SIXTH anniversary! It’s not as extravagant as last year’s, but this isn’t the 5th or the 10th, now is it? We went to Downtown Disney as a family today, but with no approved babysitter in town this weekend, we’ll go out for a nice dinner next weekend – it’s all good!

6th AnniversaryA lot has happened in the last year, most of it surrounding fostering since the end of April – all but one day of it being our second placement, “Boy.” He recently turned 3 and is really a ball of energy!

  • we got licensed in April and had a very fun party in June to celebrate with family
  • Beautiful enjoyed a full year at home and I managed to keep the business open for a 3rd year
  • my best friend got married in July in Ohio and honored me with the duties of best man
  • we took Boy to Ohio to meet Grandpa and Grandma
  • in September, we laid Grandpa to rest after 11 months on Hospice
  • we are getting to know Boy’s parents and they are coming to church with us now

Lots happening, but the days all seem to blur together until an event or crisis happens. Last year seemed to get away from us, but this year is going to be filled with date nights and intentionality.

Here’s looking at seven years, Baby!

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