Home at Last

I am finally home and back in my own bed! This was my longest and most trying hospitalization-- 14 nights of little to no sleep, poking, prodding, beeping, testing, etc. I feel a LOT better on the CDI physically, but I am physically and mentally exhausted to say the least. Today, the home health nurse and pharmacist came to the hospital to deliver my pump and first round of supplies. They are all super friendly, knowledgeable and supportive, but things are certainly overwhelming. My step mom, Beth, has been amazing through all of this. She is being designated as my primary caregiver beyond what I can do for myself, so she is going through all of the training with me. They sent us home with a big box of supplies, the pump itself, and a bag I wear that holds the pump and medication. In the house, I will carry around the smaller bag, and I have a backpack I can use to carry the pump and use as a purse when I leave the house. The pump itself is pretty small, probably about 4 x 5 inches. I get a continuous lower dose of Benadryl 24/7, which is actually less Benadryl than I was taking before. If I have breakthrough symptoms, I push the button that says "dose," and I can get an extra boost up to every 2 hours. Again, the idea is that I am getting the same amount of Benadryl or less than I was taking before, just at a consistent dose to prevent symptom breakthroughs and decrease fatigue. My steroid dose (oral) will decrease over the next couple of weeks, but in the mean time I look like an oompa loompa with a rounded moon face.

The Pump

Pouch for medication bag

Case for both pump and medication, drawstring backpack/purse in the background. The entire bag is a little larger than a normal fanny pack.

For today, we went over just the pure basics to get me home- what to do if the pump alarms, and how to pause it or start it. Showering was interesting, as the port has to stay dry, and they are having me stay connected in the shower-- supposedly Glad Press N Seal is the way to go to cover my port, and the pump sat in a bag outside of the shower door, connected to me through the door. Tomorrow, the nurse will come back to show us how to mix the bags of medication, and connect it to the bag, which has to be done daily/every day and a half. The medicine comes in vials which need to be added to bags of saline, but can't be done in advance due to the stability of the Benadryl itself. We also need to learn how to change the tubing, batteries, flush the tubes, etc. They have assured us that it will become second nature, but right now, it is hard to follow along, especially with the exhaustion. The nurse will come about once a week to change my port's needle and dressing, as well as run any labs that my doctor needs-- actually saves me trips to the clinic since they can do it all from home. My potassium is still an issue, so we are trying to figure out the best way to keep those levels up. The medication and saline will be delivered to my house, as well as any additional supplies like alcohol wipes, tubing, etc. I was pleasantly surprised with how helpful my insurance company has been through this entire process, they have been taking care of everything- supplies, pharmacy, home health, doctors, etc. Everybody has worked hard for everything to fall in to place, and things seem to be going really smoothly.

Although the next few days are going to be a challenge, I already feel a positive impact from the CDI-- no swelling, itching, and I don't feel as sedated on the pump as I did relying on oral benadryl before. I can tell the difference between the Benadryl fog and just straight up fatigue, and right now, it is a lot of the fatigue. I am having some trouble getting up and down the stairs at home, but I know this is just a matter of lost strength and will come back with time.

Thank you all so much again for your kind wishes, love and support. I will continue to post periodic updates when I am feeling up to it. For now, I am happy to be home, and excited to get some sleep!