Because Jonathan can't really keep any food or drink down, and hasn't been able to since October, he gets pretty much all of his nutrition through TPN, which is an IV bag of fluids that connects to a central line and goes into his bloodstream at the vena cava. I thought that doing TPN at home would be pretty straightforward, and I guess is some ways it is, but it involves much more medical paraphernalia than I originally anticipated, it takes more time, and I'm still super anxious all the time that I'll mess something up. Here's a glimpse into the process. I couldn't take many pictures, because it's an aseptic process so I'd have to stop and wash my hands whenever I touched the camera.
First, we have the supplies. So much stuff. We get weekly deliveries from Duke Home Infusion, in multiple giant cardboard boxes. We get the big bags of fluid surrounded by ice packs and bubble wrap (tons of fun for the kids, and we'll soon have more ice packs than we could ever use), and then we get all the other stuff like syringes, heparin and saline-filled syringes, alcohol swabs, various tapes and dressing changes, needles, rubbing alcohol, countless C batteries, and anything else we could possibly need.
Some of the supplies
The first step of getting ready for infusion is setting up the workspace. This has to happen after the kids are in bed. Doors and windows closed, animals and kids out of the room, fans off, and I start by pouring rubbing alcohol on the countertop and spreading it all around and letting it air dry. Then I can grab everything I'll need.
Pump, TPN bag, two plungers, two needles, medicines to inject into TPN bag, alcohol swabs, heparin flushes, and a trash bowl
Some TPN bags are clear, which just means they don't have fats (lipids).
After everything's arranged, I can start the process. I start by carefully opening plunger and needle packaging to assemble the needles, and popping tops on the two tiny vials of the anti-heartburn medication and the two vials of multivitamins (one water-soluble and one fat-soluble). Then I have to get 4mL of the heartburn stuff into a syringe, which involves another multi-step process including rubbing the top of the vial for 15 seconds with an alcohol swab, creating a vacuum in the plunger, etc. Once that's ready to go, I carefully set it down with the needle inside the sterile cap and move on to drawing up 5mL of each multivitamin into another syringe. After cleaning the TPN bag's port with an alcohol swab, I inject both syringes into the bag. This has to be done immediately prior to infusion. Then I rock the bag (to distribute the medicinces), set up the pump, prime the line, and get it into the backpack.
The TPN backpack holds the bag and pump, and has special outlets for the tubing.
Once I get the backpack over to Jonathan, I grab the heparin flushes and two alcohol swabs and get ready to infuse. He has a double-lumen PICC line, which (I think - remember, I'm not actually a medical professional whatsoever) means that there are two ports one could hook up to put stuff in/take stuff out directly from his bloodstream. The rule here is "TPN first," which just helps me remember to start by hooking up the (primed and ready) TPN tubing to Jonathan's TPN-labeled lumen. That's pretty simple - just cleaning his lumen with an alcohol swab and hooking it up. Then I have to clean and do a heparin flush on the other lumen just to make sure it's still working.
I also do some pretty amazing taping on dressings as they start to come off. I think I could use an entire roll of tape just for one dressing.
After that, it's really easy. Like, just the push of a button. The pump comes fully programmed, so I just hook up and it automatically does things like taper down the infusion towards the end (so Jonathan doesn't get hypoglycemic), and maintain a keep vein open (KVO) rate after the infusion is complete.
Woo! Sharps container!
The pump, in the backpack. This was just after hooking him up. He's on TPN for 14 hours each day - usually at night.
Residual TPN fluid after a +complete infusion. This was a lipid day. The nurse told us to give the extra fluid to our plants because it's the world's most expensive fertilizer. I've followed her advice and I think I shocked a plant at one point.
Not so bad after all. Still not a skill I ever particularly wanted to learn, but so it is.
Comments