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!
Sunday, May 21, 2017
Sunday, May 7, 2017
My New Constant Companion
As I begin writing this it is currently 4:30 am. Why aren't I sleeping you may ask? Well I find it hard to sleep in a hospital. Don't let me jump the gun though. Let's start at the beginning.
I have doctors appointments every 3 months for cystic fibrosis. These appointments last about 3-4 hours because I meet with an entire team of people whose only goal is to keep me alive and healthy. The end of March was my most current one. I was on a baby high and had a new mother glow. Things went smoothly. My pulmonary function tests (think lung measurement test) were up which is great, I was feeling pretty good considering I was 2 months postpartum, and I left feeling hopeful. 2 weeks after that life turned upside down. (Think Fresh Prince theme song but without the fight)
I got news that a new strain of bacteria had popped up on my test results. I always have 2 different types of bacteria in my lungs, but this 3rd one was very serious and very scary. More tests were needed to confirm what we were hoping was a fluke. Fast forward 3ish weeks. The test results sadly came back not in our favor. This certain bacteria is common in the world around us and people with a functioning immune system easily pass it through their system, but with my severely compromised immune system, it decided to move in and sign a 2 year lease.
I started having symptoms that this bacteria had set up camp and was making itself quite comfortable. The ball started rolling to get me an appointment with the doctor as soon as possible. Then the next hairpin turn came up. I woke up Thursday morning coughing A LOT. I realized there was a metallic taste in my mouth when I coughed. I realized that I was coughing up blood mixed with my sputum. As you can imagine I was terrified. This had never happened to me before. I called the doctor immediately and like a good wife (state farm is there) (oh the joys of a 4am brain) text my husband to call me, because news like this should not be read over a little screen. Of course doctors were concerned and plans were made to see them the next day.
Let's pause at this moment in time. I was terrified out of my mind. I no longer had just myself to think about. I have an incredible husband and an amazing baby girl to take care of. What was going to happen to us? As the cascade of questions began forming, none of which I could answer, the self doubt and guilt began also. Second guessing choices I'd made and things that were completely out of my control I blamed myself for. When life gets tough, I tend to retreat inside my shell to wait out the storm, a storm I soon found out would last about 18-24 months.
So after a long but informative appointment, here we are. My little family camped out in a hospital room that is 10 steps from window to door. I have a PIC line (a fancy iv inserted between my elbow and shoulder) that will remain there for 3-6 months. I'm on continuous iv antibiotics and oral antibiotics to hopefully hit the ground running on treating my unwelcome friend. After correct dosage is figured out, I can then continue treatment at home with an in home nurse coming weekly.
Am I still scared? Yes
Do I know what the next 2 years will be like? I've prepared for most likely the hardest 2 years of my life as treatment is very taxing on all aspects of life.
Am I frustrated? Absolutely
Is my faith growing? Honestly, not yet.
Am I blessed? Beyond measure.
Something like this brings out the best and worst in people. (I say worst meaning myself.) The amount of love and support that has poured in is incredible. Being scared makes me a little harsh and too quick to misinterpret things that are said, but even then, people tend not to give up on you. Love is funny that way. I am not feeling strong, but know somewhere deep down I am. I'm not feeling upbeat, but soon I will.
As you're reading this you may be thinking "oh no I need to help her" (crazy I can read minds now) and the most helpful thing is good thoughts and prayers directed this way. With how large my family has become I can only imagine how many prayers have been said on my behalf, but I know they have helped because I'm still moving forward, one foot in front of the other.
The enlightening part about breaking down-once you've broken down, you can start to rebuild. Love you all. I wouldn't have made it this far without you.
I have doctors appointments every 3 months for cystic fibrosis. These appointments last about 3-4 hours because I meet with an entire team of people whose only goal is to keep me alive and healthy. The end of March was my most current one. I was on a baby high and had a new mother glow. Things went smoothly. My pulmonary function tests (think lung measurement test) were up which is great, I was feeling pretty good considering I was 2 months postpartum, and I left feeling hopeful. 2 weeks after that life turned upside down. (Think Fresh Prince theme song but without the fight)
I got news that a new strain of bacteria had popped up on my test results. I always have 2 different types of bacteria in my lungs, but this 3rd one was very serious and very scary. More tests were needed to confirm what we were hoping was a fluke. Fast forward 3ish weeks. The test results sadly came back not in our favor. This certain bacteria is common in the world around us and people with a functioning immune system easily pass it through their system, but with my severely compromised immune system, it decided to move in and sign a 2 year lease.
I started having symptoms that this bacteria had set up camp and was making itself quite comfortable. The ball started rolling to get me an appointment with the doctor as soon as possible. Then the next hairpin turn came up. I woke up Thursday morning coughing A LOT. I realized there was a metallic taste in my mouth when I coughed. I realized that I was coughing up blood mixed with my sputum. As you can imagine I was terrified. This had never happened to me before. I called the doctor immediately and like a good wife (state farm is there) (oh the joys of a 4am brain) text my husband to call me, because news like this should not be read over a little screen. Of course doctors were concerned and plans were made to see them the next day.
Let's pause at this moment in time. I was terrified out of my mind. I no longer had just myself to think about. I have an incredible husband and an amazing baby girl to take care of. What was going to happen to us? As the cascade of questions began forming, none of which I could answer, the self doubt and guilt began also. Second guessing choices I'd made and things that were completely out of my control I blamed myself for. When life gets tough, I tend to retreat inside my shell to wait out the storm, a storm I soon found out would last about 18-24 months.
So after a long but informative appointment, here we are. My little family camped out in a hospital room that is 10 steps from window to door. I have a PIC line (a fancy iv inserted between my elbow and shoulder) that will remain there for 3-6 months. I'm on continuous iv antibiotics and oral antibiotics to hopefully hit the ground running on treating my unwelcome friend. After correct dosage is figured out, I can then continue treatment at home with an in home nurse coming weekly.
Am I still scared? Yes
Do I know what the next 2 years will be like? I've prepared for most likely the hardest 2 years of my life as treatment is very taxing on all aspects of life.
Am I frustrated? Absolutely
Is my faith growing? Honestly, not yet.
Am I blessed? Beyond measure.
Something like this brings out the best and worst in people. (I say worst meaning myself.) The amount of love and support that has poured in is incredible. Being scared makes me a little harsh and too quick to misinterpret things that are said, but even then, people tend not to give up on you. Love is funny that way. I am not feeling strong, but know somewhere deep down I am. I'm not feeling upbeat, but soon I will.
As you're reading this you may be thinking "oh no I need to help her" (crazy I can read minds now) and the most helpful thing is good thoughts and prayers directed this way. With how large my family has become I can only imagine how many prayers have been said on my behalf, but I know they have helped because I'm still moving forward, one foot in front of the other.
The enlightening part about breaking down-once you've broken down, you can start to rebuild. Love you all. I wouldn't have made it this far without you.
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