Here's the soundtrack for me lately. Feel free to dial it up as you tune into the latest adventure here.
The Blower's Daughter (Damien Rice)
Who Says (John Mayer)
Details in the Fabric (Jason Mraz)
Come Around (Rosie Golan)
Crystalised (The XX)
So, Jonathan's coming home tomorrow!
I'm... anxious. Don't think I haven't memorized the odds for infection with TPN on a PICC line. Or the problems that Jonathan's pulmonary embolism could cause.
He'll be on TPN for 16 hours each day. So at 9:00 every night, I do the infusion procedure. There are so many steps. As part of the latest FGO, I now know how to do heparin flushes, saline flushes, how to draw 5mL of the fat-soluble multivitamins and then 5 mL of the water-soluble multivitamins and then inject them into the TPN bag in an aseptic manner. How to do the same for 4mL of the antacid. How some days will be lipid days, but the lipids can't mix with the regular TPN solution so I have to break the seal separating them and let it mix immediately prior to infusion. I know how to prime the line to avoid an air embolism, how to troubleshoot issues like a cap falling off or the line breaking or a clot in the line. I know how to whack the saline-loaded syringe against the heparin one to get the bubbles out.
Jonathan knows a lot too. Like how to empty and flush the percutaneous drain constantly pulling pus out of his pseudocyst (I promise it's even more gross in person than you think). And to inject himself with Lovenox twice a day.
And we both learned that Lovenox costs $500 per week. That's our cost.
And TPN costs $240 per day.
And really, people on TPN should have multivitamins in their solutions every day. But there's a national shortage of multivitamins so he'll get them three times a week if they're available.
The dentist called this morning to let me know that they need to pull Evelyn's canine on the side where she lost her central incisor last week. That'll allow the baby lateral incisor that's already starting to erupt to drift back and leave room for her adult central incisors. We'll go to the pediatric dentist for the extraction, because the pediatric dentist can give laughing gas and our family dentist can't.
So, months ago, we decided that if we got rid of cable and did some other creative money-saving practices, we could probably afford to have someone clean our house sometimes. I had it in my head that tomorrow was the day that would happen. I had it in my calendar as such. And then I came home to a house that was curiously clean. The baseboards were clean. The laundry was folded. The toys were picked up. The beds were made. After about twenty minutes of walking around the house thinking I was surely losing my mind, I finally sat down on the kitchen floor and cried and searched my email and discovered that the appointment was set for this morning. And they cleaned ALL THE THINGS. It would probably be normal to feel... happy? I felt awful, because I should have picked up the toys and washed the dishes in the sink so they didn't need to, and folded the clothes so they weren't in the way.
Oh, the nurse (TPN coordinator, not regular nurse) noticed today that Jonathan is super pale. We said yeah, he's been that way for a while. So she decided to check his hemoglobin, hematocrit, and iron levels. All quite low. And then she took some time to explain a bunch of the numbers to us as far as his bloodwork goes. Ever since we've been under the care of the Biliary Surgery team, we've had pretty much zero helpful communication from anyone, so it was really nice to have things communicated to us and explained. So thanks to Katrina. I'll add her to the growing thank-you card list, and one day I'll get those cards out.
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