I can’t believe how long it’s been since I’ve posted here. Sorry! Its funny how distracting being at home is – and tiring, too. I try to do a few dishes here, start a load of laundry there, been doing infusions five times a day, testing blood sugars three times a day, and then am tethered to the TPN 16 hours a day.
Two weeks ago today I was discharged from the hospital.
When I got home I was weak as a kitten! Since then I’ve been making baby steps in the right direction and have more stamina and am able to little bits more most days.
I’m 19 days in on the 6 weeks NPO. It would be a lie if I told you I didn’t care about eating. I do want to eat. In fact, I’ll be doing something – totally non-related to food – and all of a sudden some vision or memory of a taste will pop into my head. The roast beef sandwiches Grammy used to make for me on whole wheat bread, mustard, salt, and a smidge of mayo – wrapped in wax paper, and taken along with us for a picnic later on in the day. They were the BEST sandwiches. My mouth is watering! But I’m being strong. Lots of tooth brushing, gargling with mouthwash, and rinsing and spitting with water.
Last Wednesday I actually got my act together enough to get to Precepts. I couldn’t take my lesson with me because I have a weight limit – and my TPN takes that up. But it was wonderful to go and take part, and reconnect with those wonderful ladies! They are such a blessing to me!
It was a quiet weekend – Jessica and Jonathan went on the High School Fall Retreat and were gone Friday through Sunday. William spent Saturday at his friend’s house. John and I took a lovely ride out in the country – it was sunny and beautiful, and it was so nice to just get out of the house. And I was able to make it to church again on Sunday – it’s just so important for me to go – it helps keep me centered and balanced.
Monday morning I got up early so I could make Jonathan a good breakfast – I had to get it put together before my 6am Flagyl infusion. And I just made it. I went into my room, set up the infusion, and reclined on the bed to watch the news while it infused. Within about five minutes I started having a kind of pressure on my chest/lungs. Shortly thereafter, my breathing started to feel – painful. Then all of a sudden there was a ton of fluids that felt like they were closing my airways. And my throat started to constrict, and my chin started to itch. I was trying to think, “What’s going on here?” Coughing started – and I had to work at getting a breath. I called to the kids – they came running. I thought, “Slow the infusion down – maybe that’s it.” I slowed it down, and it helped a little, but not a lot. One of the kids said, “Turn it off!” and so I did, and then called the OptionCare nurse line. They told me to either call 911 or go to the Emergency Room. Jess drove me to the Emergency Room.
Here I’ve been on Flagyl since JULY, people, and I’ve now developed an allergic reaction to it. I spent a few hours in the ER, they did a once over, and hear some congestion in my lungs, so gave me a breathing treatment, and IV Benadryl. A had a couple of hives, they cleared with the Benadryl. I was eventually discharged home with an order for 25 mg IV Benadryl every 6 hours for two days. I pretty much slept through Monday! I’m such a Benadryl wimp!
AND… they took me off of the Flagyl – after consulting with all of my appropriate doctors.
The milestone for this week – today, actually, is that today my only infusion I’ll be doing from here on out is TPN. I’m officially off of all of the antibiotics.
It’s so freeing! That’s five different infusions a day less for my schedule! Yay!
And, this afternoon I go for an Upper GI. (Blech) I’m going to pay really close attention to the films and see what I can see. Oh please, Lord! Let this fistula be closed up!
More as I know it!