Continuous Benadryl Infusion

"But those who hope in the Lord will renew their strength. They will soar on wings like eagles, they will run and not grow weary, they will walk and not be faint."

-Isaiah 40:31

     I've officially been home for three days! I am still so exhausted and sore. Turns out when you start actually doing things after a month of doing nothing your body tends to be pretty mad at you. So I've had to take lots of naps. I am so happy to report that the continuous benadryl infusion is still working so well! I'm still learning how to live with tubing attached to me 24/7 but I'm adjusting. One of the biggest things I forget is that I'm now attached to my purse so I can't just throw it on my couch when I get home and walk away... I've tried it doesn't go well. Anyways; a lot of people have been asking how it works and what it looks like. So I figured I would try to explain it here! 

     

Once a week I get a delivery from my home health company. It's a big box with 7 bags of saline with benadryl mixed in. I receive 11mg of benadryl over the course of an hour. It doesn't make me sleepy because I am getting such a low dose over an extended period of time. If anything I've noticed I have a little bit more energy because the medication is actually doing it's job and calming my mast cells down enough that my biggest symptom of fatigue and brain fog has actually lessened. Also in the box is 7 days worth of IV tubing, the supplies to change my dressing on my PICC line, batteries, and a few other misc. things.

     Every night around 6:00 I have to change the benadryl bag. It takes about ten minutes start to finish. This involves "spiking the bag". The IV tubing has a pointy end that I insert into the benadryl bag. Then I run the tubing through the pump and prime the tubing. This runs the medication through the tubing to get rid of all the air. Finally I hook it up to my PICC line. I run the tubing up my arm and through my shirt. The pump is programmed at my home health pharmacy and then locked so I can't change the dosing at all. I can only turn it on and press run. 

   

  The biggest issue I've ran into so far is because I am running the pump 24/7 I am having to change the batteries twice a day. Usually once around noon and once around midnight. Changing the batteries takes maybe three minutes but I am having to remember to put replacement batteries in my purse in case I'm out and about. I surprisingly haven't had it been because of a kink in the line at all. I was expecting it to happen quite a bit because I do have the tubing going under my shirt.Although it has, and will be, an adjustment I'm still so thankful to finally have found something that seems to be working. I am currently on the low end of dosing so I can go up on dosing if needed but I haven't had to do that yet. The goal is to be on the benadryl for about three months. This will give my body time to stabilize. We will also be trying the xolair shots again and hopefully the benadryl will give the xolair time to build up and start working and we can back off of the benadryl. If you have any questions about the CDI or ambulatory infusions let me know! I'm no expert but I'm learning. 

With Love, 

Elizabeth <3