Thank you from the bottom of my heart for the outpouring of love after my last post. Nothing about this new journey has been easy, but I know without a doubt that your prayers have strengthened me and helped me get through each day.
So, an update. I've actually been home a week. I was released from the hospital last Friday afternoon with some mementos to take with me. A cool fashionable fanny pack and an awesome bruise from the blood clot I developed above my PICC line insertion. My PICC line will be with me for about 6 months. I get to switch out my own iv meds which has been pretty interesting. The meds come prepacked and ready to go. It's full proof and there is no possible way to mess it up which is pretty relieving. I have one antibiotic I am on for 23 hours a day and another I am on for an hour a day. Although we have hit a milestone because the hour a day one is now only Monday, Wednesday, and Friday. I can have an hour a day 4 days a week not attached to my leash. Can I get a Hallelujah?
I had imagined coming home from the hospital would be a joyous occasion, and while it was so nice to be in my house, not confined to small room, reality set in and hit me pretty hard. I realized this is my foreseeable future. You expect to be hooked up to tubes when in the hospital, but now that I'm home and the tubes are still there, I've taken it pretty hard. There has been more than one incident of moving too fast or not being aware of what I'm doing and ended up tugging on my iv line. Good thing the dressing covering it is strong. Sorry if I made anyone wince, a shiver runs up my spine just remembering it. Chloe and an iv line don't really mix either. She is in the happy stage of learning to grab things, my iv tubing being one of them. When she grabs it too high, it can be difficult to pry it out of her adorable steel trap grip with one hand. I cringe thinking of the day she learns to crawl and catches me unaware and latches on to the iv, but I'll save that challenge for another day.
I am continuously amazed at her resilience and strength. She took to a bottle and formula like a champ. I took stopping nursing harder than she did. I still miss it a lot and she has many times given me her "you're being ridiculous" face as I try to hold back tears while feeding her a bottle. Though the upside is that formula keeps her full a lot longer than breastmilk and I enjoy getting 6 hours of continuous sleep a night. I am glad she won't have memories of this time. Babies don't care too much about having pajama days or staying in bed most of the day. Just give her attention, food, a clean diaper, and she is good to go. I absolutely love being a mom. She is my rock, my reason to get out of bed and keep moving forward. She is also a huge part of my motivation to continue the fight against CF. Her and TJ are my strength when I am weak. They keep me moving forward hour after hour. Without them, the depression that grips so many with a chronic illness would be a lot more abundant than it is now.
So, how am I? I'm alright. The main side effect from the many antibiotics I am on is flu like symptoms. With that in mind, I feel achy pretty much all the time which makes daily life a struggle at times. I am trying to be positive, but that isn't the easiest thing. Don't let me lead you to believe that I don't see the abundance and greatness around me. My family and friends are incredible. They step in at the exact moment I don't think I can take another step. They have brought food and good company. I am surrounded by people who make me feel like their only job is to help lift me up. I don't know what I would do without them.
It's pretty much impossible to describe my appreciation for all that people have done. From the dinners, conversations, treats, good thoughts, and prayers, I am surrounded by love. I pray for you all daily with the struggles you face. I have to remember I am not the only one having a hard time, which helps me get out of my own head. As each day passes, I am another day closer to getting this PICC line out, getting rid of this bacteria, and one day closer to a cure for CF. Countdown chain anyone? I've got construction paper!
No comments:
Post a Comment