Cystic Fibrosis Fatboy

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

The 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 us 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

I 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.