Since My Birthday:
Well, good news since the last post (when I was admitted at my last appointment, unfortunately on my 31st Birthday)! My port has been working since we used the de-clogging medicine. Whew! I was honestly wigging out about the idea of replacing it. I posted a video describing more on my CF Facebook Page, Here!
So luckily since that worked we haven't had too many speed bumps. I hope I'm gaining weight. I know my breathing is a bit better. Not coughing all the time anymore. Only coughing with increased movement or activity. I had a bit of an asthma attack trying to shower & wash my hair. But, to be fair that it is a bit of struggle when you can't get your chest wet at all. I end up doing the hokey pokey in and out of the shower with arms, legs, etc. I wash my hair typically in the sink.So it takes time and some movement, etc. However, I'm more upset that I left my blow dryer at home, I have been frustrated that I can't dry my hair flat/straight. Wet hair, ew. Plus, since it dries naturally my longer side is curling. It drives me bonkers!!! But hey, if that is what I'm the most peeved about right now (while in the hospital), then I'd say all is going pretty smoothly, since the minor port meltdown I had.
Only a few tiny issues have popped up, but nothing really medical. 1st challenge is doing the vest with a mediport (in your right breast) being accessed. I don't want to move the needle around too much, but I need the vest high enough it actually does its job. I do have an acapella machine (it's a fancy one that you can take apart to actually clean). However, I don't think it is as productive for me as the vest or manual. I don't think the RT's enjoy doing the manual CPT (Chest Percussion Therapy) too much though. I'm sure it gets tiring, but I wish they did. It is sooo much better for me while I have the needles in. However, they don't usually even give it as an option. So I will just have Andrew do that while I'm at home. However, my RT last night was super creative. We put my vest on backwards/ upside down. Haha, check out the picture. I hug a pillow in front so it stabilizes my needle more too! So that has been a bit better since we figured that way out!
The only other snag, has been the kitchen forgetting I'm on a HIGH calorie diet. I'd asked for a double order of bacon and got 3 single bacon strips. Haha. I posted this video about my issues with not sending me the right amount of food (or sending my skim milk instead of whole). Makes no sense. I've called down and talked to them again. So maybe eventually it will sink in. However, they did weigh me late last night and I was 105 lbs! So HAPPY! I lost 8 pounds when I got sick, but 5 are back since this hospital stay. Due to ordering tons of food, the steriods, and lack of burning calories (while laying in a bed). YAY! Now, to just build up my endurance, so I can walk without getting winded.
And so far everything is going as planned.
I'm still doing Tobra & Aztreanom IVs throughout the day. The Aztreonam I do every 8 hrs, so 8am, 4pm and 12am. Then we do Tobra every 24 hours. IV steriod (Solumedrol) and some extra vitamin doses. [Apparently at my annual clinic last 2 weeks ago, Doc found out my vitamins are disappearing again. I take 50,000 units of Vitamin D on sundays. But by the next day he said my vitamin D was low.. So was E and A] Also, while in the hospital I'm doing 4 albuteral nebulizers and Vests, followed by either a pulmozyme or Hypertonic Saline. Those 2 alternate (doing each 2x a day). I'm eating 3 meals and 3 snacks a day, 4 carnation instant breakfasts. And Friday night I started my evening walks around the floor, I only did one lap. Hoping for 2 today! Perk to being the ONLY CF patient in right now! Yay! I get to actually leave my room!
I just wish they would let me go down a floor (there is a Starbucks down there).
It's was really nice that Andrew was able to take off work and be with me on my Birthday (while I was admitted) and then stay that first night with me. My parent's got a hotel nearby, but hung out too! Sadly, they all had to leave yesterday around 4pm to get home at a decent time (thanks to my hospital being 4 hours from where Andrew & I live). My parents and sister are coming up tomorrow(Saturday) morning. It's been a pretty boring 41 hours without guests so far!!! Ada is going to stay in the hospital with me tomorrow night and my parents will be at the hotel. They will probably leave Sunday to go home around 3pm, which is when Andrew will leave Peoria to come back up. He has Sunday Night, Monday, and Tuesday off. His boss is switching around his days at work next week for us.
Doc said as long as I keep progressing the way I am, we are hoping I can go home next week! Granted, doing my Ivs, Meds, walks, and eating will be a full time job for two more weeks at home. So I won't be going to work or seeing many people much. But at least I will be home! I will keep you posted. I do know I get run down trying to manage it all and get better at home, Andrew works all the time. So I need make sure I'm healthy enough to go home and finish my meds on my own. So we will see how I progress when we do my lung function tests on Monday! I want to see a huge jump up in numbers, since I know once I go home I have trouble climbing back up lung function wise. So fingers crossed for Monday! Also, I have a friend having a VERY important test on Monday (practically life or death), so even though I want them to remain anonymous, think about them please!
Also, as far as work and post-licensing hours that I was stressing over. I think I got that figured out. Thanks to a friend & my managing broker for checking into everything for me! I just got to sign up for a webinar & hoping I can get a refund from my company for the class I can't take.
Now, let's just hope everything keeps going smoothly and no more bumps in the road!!! Keep you all posted!
Well, good news since the last post (when I was admitted at my last appointment, unfortunately on my 31st Birthday)! My port has been working since we used the de-clogging medicine. Whew! I was honestly wigging out about the idea of replacing it. I posted a video describing more on my CF Facebook Page, Here!
So luckily since that worked we haven't had too many speed bumps. I hope I'm gaining weight. I know my breathing is a bit better. Not coughing all the time anymore. Only coughing with increased movement or activity. I had a bit of an asthma attack trying to shower & wash my hair. But, to be fair that it is a bit of struggle when you can't get your chest wet at all. I end up doing the hokey pokey in and out of the shower with arms, legs, etc. I wash my hair typically in the sink.So it takes time and some movement, etc. However, I'm more upset that I left my blow dryer at home, I have been frustrated that I can't dry my hair flat/straight. Wet hair, ew. Plus, since it dries naturally my longer side is curling. It drives me bonkers!!! But hey, if that is what I'm the most peeved about right now (while in the hospital), then I'd say all is going pretty smoothly, since the minor port meltdown I had.
Only a few tiny issues have popped up, but nothing really medical. 1st challenge is doing the vest with a mediport (in your right breast) being accessed. I don't want to move the needle around too much, but I need the vest high enough it actually does its job. I do have an acapella machine (it's a fancy one that you can take apart to actually clean). However, I don't think it is as productive for me as the vest or manual. I don't think the RT's enjoy doing the manual CPT (Chest Percussion Therapy) too much though. I'm sure it gets tiring, but I wish they did. It is sooo much better for me while I have the needles in. However, they don't usually even give it as an option. So I will just have Andrew do that while I'm at home. However, my RT last night was super creative. We put my vest on backwards/ upside down. Haha, check out the picture. I hug a pillow in front so it stabilizes my needle more too! So that has been a bit better since we figured that way out!The only other snag, has been the kitchen forgetting I'm on a HIGH calorie diet. I'd asked for a double order of bacon and got 3 single bacon strips. Haha. I posted this video about my issues with not sending me the right amount of food (or sending my skim milk instead of whole). Makes no sense. I've called down and talked to them again. So maybe eventually it will sink in. However, they did weigh me late last night and I was 105 lbs! So HAPPY! I lost 8 pounds when I got sick, but 5 are back since this hospital stay. Due to ordering tons of food, the steriods, and lack of burning calories (while laying in a bed). YAY! Now, to just build up my endurance, so I can walk without getting winded.
And so far everything is going as planned.
I'm still doing Tobra & Aztreanom IVs throughout the day. The Aztreonam I do every 8 hrs, so 8am, 4pm and 12am. Then we do Tobra every 24 hours. IV steriod (Solumedrol) and some extra vitamin doses. [Apparently at my annual clinic last 2 weeks ago, Doc found out my vitamins are disappearing again. I take 50,000 units of Vitamin D on sundays. But by the next day he said my vitamin D was low.. So was E and A] Also, while in the hospital I'm doing 4 albuteral nebulizers and Vests, followed by either a pulmozyme or Hypertonic Saline. Those 2 alternate (doing each 2x a day). I'm eating 3 meals and 3 snacks a day, 4 carnation instant breakfasts. And Friday night I started my evening walks around the floor, I only did one lap. Hoping for 2 today! Perk to being the ONLY CF patient in right now! Yay! I get to actually leave my room!
I just wish they would let me go down a floor (there is a Starbucks down there).
It's was really nice that Andrew was able to take off work and be with me on my Birthday (while I was admitted) and then stay that first night with me. My parent's got a hotel nearby, but hung out too! Sadly, they all had to leave yesterday around 4pm to get home at a decent time (thanks to my hospital being 4 hours from where Andrew & I live). My parents and sister are coming up tomorrow(Saturday) morning. It's been a pretty boring 41 hours without guests so far!!! Ada is going to stay in the hospital with me tomorrow night and my parents will be at the hotel. They will probably leave Sunday to go home around 3pm, which is when Andrew will leave Peoria to come back up. He has Sunday Night, Monday, and Tuesday off. His boss is switching around his days at work next week for us.
Doc said as long as I keep progressing the way I am, we are hoping I can go home next week! Granted, doing my Ivs, Meds, walks, and eating will be a full time job for two more weeks at home. So I won't be going to work or seeing many people much. But at least I will be home! I will keep you posted. I do know I get run down trying to manage it all and get better at home, Andrew works all the time. So I need make sure I'm healthy enough to go home and finish my meds on my own. So we will see how I progress when we do my lung function tests on Monday! I want to see a huge jump up in numbers, since I know once I go home I have trouble climbing back up lung function wise. So fingers crossed for Monday! Also, I have a friend having a VERY important test on Monday (practically life or death), so even though I want them to remain anonymous, think about them please!Also, as far as work and post-licensing hours that I was stressing over. I think I got that figured out. Thanks to a friend & my managing broker for checking into everything for me! I just got to sign up for a webinar & hoping I can get a refund from my company for the class I can't take.
Now, let's just hope everything keeps going smoothly and no more bumps in the road!!! Keep you all posted!
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