That's right...after 7 days in the hospital, I was given the 'yes' to go home today! I am so happy to be here, I just arrived and it feels great to be out of the hospital... I can't wait to sleep in my own bed tonight :)
How am I feeling, you may ask? Well, I am definitely feeling tons better than when I was admitted last Friday... However, I'm not fully better and I have another few weeks ahead of infection fighting and strength-gaining recovery to do. My lung function is still down, and my breathing is still short off and on. I am digesting my food better, praise the Lord, and I am no longer coughing out blood (sorry if that is too graphic for ya'll). So since I started to make some progress, and the docs know that I will take very good care of myself at home...they let me come home to enjoy the comforts of home plus home IV medications and treatments.
What's the plan? I will spend the next week completely at home, I've been instructed not to work or expend too much energy (I promised my doc as he graciously wrote the orders for me to leave, haha). The goal is to take care of myself as they did for me in the hospital which means I will still work do 4-5 breathing treatments a day to keep clearing my lungs, 3 antibiotics (2 through an IV) and maintain little bits of exercise and eating well to keep my body strong (that won't be hard because the food at home is a million times better ;).
Some thoughts/prayers for the next few weeks...
I wish that I could say that I'm back to normal, 100%, but that's not the case and it's going to take some patience as my body continues to fight this infection. I ask for your prayers once again, as this is almost a more difficult battle being more on my own. Being in the hospital is hard, but is a huge help because a whole staff is there to take care of me and help me when I'm not feeling well. Being home, I am more independent and it takes energy to remember my meds every 6 hours, do my breathing treatments every 4 and somehow fit the eating and sleeping in :). I've done this before, and my parents are awesome, and will be graciously helping me...but I ask for your prayers to pray that my body will heal and continue to gain strength as the infection continues to go away...I've made LOTS of progress so here's to another great week of getting me back on my feet.
You are loved...yes, YOU!
I don't know how to thank EACH of you for the incredible support you gave me. As I lied in bed each night in the hospital it could have been so easy to feel alone, the hospital is a difficult place...But each time I felt that, I knew that there was love and support pouring out from friends and family, and I knew that I had a community of people and my loving God to walk through this beside me. Living a life with CF is not easy, but having people to "live" it with you makes a world of difference. Thank you all for being with me when I am full of energy and feeling great, and when i'm battling the reality and severities that CF brings, I am incredibly lucky and joyful to have each of you a part of my life :).
I'll keep updating the blog as I progress, but for now, I am just glad to be home to eat dinner that my wonderful mom cooked! Hope you all have a WONDERFUL Labor Day weekend...leave a comment to tell me the fun things you did, if you want...i'll post here and there :)
Thank you for being with me throughout the week at the hospital, I am so blessed.
~Em
Friday, August 29, 2008
Thursday, August 28, 2008
Thursday...a good day
I thought I might be going home today, but alas it was not meant to be. I enjoyed my day today, the best part of the day was that I got to sleep a full 8 hours last night without being interrupted!! That's pretty rare in the hospital, but being on this new floor, the nurses are used to have CF patients that are for the most part, stable. Therefore they don't have to check vital signs (blood pressure, temp etc) every 4 hours and they let us sleep!! I was shocked when I woke up at 8:30 this morning :)...The day started out great!
I was given great care and being on this new floor and in a new room is a world of difference :). I had a great time hanging out with my mom and then later with Brynne and Steve, good friends of mine. I am so glad to have had company to spend some time with...
I'm off to bed, I'm having a little difficulty breathing so if you read this, I ask for your prayers that it will end quickly and i'll go to sleep shortly...And I've been told that tomorrow may be the day I get to go home :)...Let's hope so!!
Love to all-
~Em
I was given great care and being on this new floor and in a new room is a world of difference :). I had a great time hanging out with my mom and then later with Brynne and Steve, good friends of mine. I am so glad to have had company to spend some time with...
I'm off to bed, I'm having a little difficulty breathing so if you read this, I ask for your prayers that it will end quickly and i'll go to sleep shortly...And I've been told that tomorrow may be the day I get to go home :)...Let's hope so!!
Love to all-
~Em
Wednesday, August 27, 2008
A New Room!
At the end of a VERY busy day with docs/specialists, more x-rays and blood tests, I was finally moved to the "CF Floor". This floor is a MUCH quieter floor with lots of nurses and respiratory therapists that are comfortable and knowledgeable about Cystic Fibrosis. I've heard great things about this floor, so I am glad to be here and even more glad that I'm at the end of the hall with no noise outside my door... :)
I'm also starting to feel better, for the first time i'm taking deeper breaths and getting more oxygen- so we'll see if this helps me get home soon! I'll keep my blog updated.
Here's to some good sleep tonight!
~Em
I'm also starting to feel better, for the first time i'm taking deeper breaths and getting more oxygen- so we'll see if this helps me get home soon! I'll keep my blog updated.
Here's to some good sleep tonight!
~Em
Busy Day Today!
Life never stops here in the hospital...no wonder they don't put locks on the doors, otherwise I think patients would lock people out just to get some sleep!! I know I would :)
It's been a busy day today, I've met with the Rheumatologist to assess my CF-related Arthritis, gotten more x-rays, and I should be meeting with the ENT to assess my sinus issues too. I'm so glad to be getting all this done and meeting the specialists I need to meet before going home...It's a few less things I need to do when I'm back into normal life and getting all the tests they want done now, makes it so much easier. I might as well get everything done while they've got me in one place!
I'm going to attempt to take a nap now, but we'll see how that goes...haha :)
Happy Wednesday, friends!
~Em
It's been a busy day today, I've met with the Rheumatologist to assess my CF-related Arthritis, gotten more x-rays, and I should be meeting with the ENT to assess my sinus issues too. I'm so glad to be getting all this done and meeting the specialists I need to meet before going home...It's a few less things I need to do when I'm back into normal life and getting all the tests they want done now, makes it so much easier. I might as well get everything done while they've got me in one place!
I'm going to attempt to take a nap now, but we'll see how that goes...haha :)
Happy Wednesday, friends!
~Em
Tuesday, August 26, 2008
Update
Today was a great day! I met with my doctors and the entire CF team, (see this post for previous info). They talked with me about how I'm doing and also we discussed a 'plan' to hopefully get me home soon :)...
Health Update: I have been here for 5 days and this is about when the medications should start to work. I am not feeling any better, really, I am still pretty short of breath, coughing a ton and mostly exhausted because my body is working so hard to fight this infection. I am also, unfortunately, having a lot of digestive problems and my food hasn't exactly been feeling too good in the tummy (enough said). All that is to say, I still have a few weeks ahead of IV meds to kick this infection and get back to my normal stamina, breathing, and living an active life. But, I think I'm starting to see little improvements along the way and being here has really helped me to rest as I allow others to take care of me.
Some Good News: If I start to make some improvements in the next few days and I will do some more tests to make sure my stomach and digestion are all working ok, my doctor is willing to let me go home and continue treatment there, maybe by the end of the week :)...yay! We will see, I will let you all know.
Prayer/Support: For now, I ask for prayers that my body will start to fight the infection with the help of the meds, that I can get lots of rest. Pray that the meds will work hard to kill the bacteria, and that I can have minimal side effects to them. Also, pray the issues with my stomach will get worked out, it's no fun :(.
After seeing my docs today, I feel encouraged that being here to immerse myself in health care for my body is really helping! This hospital and my doctors are incredible, they have done a great job taking care of me and still trying allowing me to live a semi-normal life (going outside, walking, little exercising, eating, resting). I am so encouraged as dear friends and family have surrounded me with love, phone calls (even if I don't return them know you are loved), emails, and prayer...My spirits are up as I know I'm not fighting this battle alone. Both God and people are walking with me in this, I feel so overwhelmed with family of support around me, I cannot thank everyone enough.
Love to all,
~Em
ok...so granted this isn't the most flattering picture, but I wanted to say hello with my face, not just words on a blog :)
Health Update: I have been here for 5 days and this is about when the medications should start to work. I am not feeling any better, really, I am still pretty short of breath, coughing a ton and mostly exhausted because my body is working so hard to fight this infection. I am also, unfortunately, having a lot of digestive problems and my food hasn't exactly been feeling too good in the tummy (enough said). All that is to say, I still have a few weeks ahead of IV meds to kick this infection and get back to my normal stamina, breathing, and living an active life. But, I think I'm starting to see little improvements along the way and being here has really helped me to rest as I allow others to take care of me.
Some Good News: If I start to make some improvements in the next few days and I will do some more tests to make sure my stomach and digestion are all working ok, my doctor is willing to let me go home and continue treatment there, maybe by the end of the week :)...yay! We will see, I will let you all know.
Prayer/Support: For now, I ask for prayers that my body will start to fight the infection with the help of the meds, that I can get lots of rest. Pray that the meds will work hard to kill the bacteria, and that I can have minimal side effects to them. Also, pray the issues with my stomach will get worked out, it's no fun :(.
After seeing my docs today, I feel encouraged that being here to immerse myself in health care for my body is really helping! This hospital and my doctors are incredible, they have done a great job taking care of me and still trying allowing me to live a semi-normal life (going outside, walking, little exercising, eating, resting). I am so encouraged as dear friends and family have surrounded me with love, phone calls (even if I don't return them know you are loved), emails, and prayer...My spirits are up as I know I'm not fighting this battle alone. Both God and people are walking with me in this, I feel so overwhelmed with family of support around me, I cannot thank everyone enough.
Love to all,
~Em
ok...so granted this isn't the most flattering picture, but I wanted to say hello with my face, not just words on a blog :)
CF Team Rounds, Today
Today is a big day, and hopefully I'll get lots of information about how I'm doing (based on all the blood tests, CT scans, xrays etc...that i've done). This afternoon I will see the entire CF Team as they assess me and look at my progress. My CF Team consists of 2 doctors, a dietician, nutritionist, pharmacist, social worker, respiratory therapist and case manager/center coordinator.
Please pray this afternoon for me, and for them. Pray the docs can have wisdom as to how to treat some of my nagging symptoms of this infection (i'll post about how i'm doing next), and pray for me that I can be open and honest with them and get to know them. This team will be treating me for a long time in the future, so I am glad to get to know them and for them to get to know me as their patient :).
Thanks- i'll update later about how my day goes :)
~Em
Please pray this afternoon for me, and for them. Pray the docs can have wisdom as to how to treat some of my nagging symptoms of this infection (i'll post about how i'm doing next), and pray for me that I can be open and honest with them and get to know them. This team will be treating me for a long time in the future, so I am glad to get to know them and for them to get to know me as their patient :).
Thanks- i'll update later about how my day goes :)
~Em
Monday, August 25, 2008
Today's Joys
Before I go to bed, I wanted to share some of the things I am thankful for today :)
-A great, long nap this morning
-Emails of encouragement from friends
-Good medical care and nurses
-Visits from good friends full of laughter and smiles :)
-Walking around in the sunshine with my dad
-Watching a little Gilmore Girls to end my night
At the end of the day I am reminded that even through times in the hospital, frustration when I can't breathe, and exhaustion from just sitting around, I see that I have so much to be thankful for :). For that, I can't complain- I have an incredible life full of so much I could have never asked for- and though i'm taking a little reprieve from being social and enjoying the things I normally do, while I let my body get back to normal, I am just feeling thankful tonight, of the gifts that God has given me....
~Em
-A great, long nap this morning
-Emails of encouragement from friends
-Good medical care and nurses
-Visits from good friends full of laughter and smiles :)
-Walking around in the sunshine with my dad
-Watching a little Gilmore Girls to end my night
At the end of the day I am reminded that even through times in the hospital, frustration when I can't breathe, and exhaustion from just sitting around, I see that I have so much to be thankful for :). For that, I can't complain- I have an incredible life full of so much I could have never asked for- and though i'm taking a little reprieve from being social and enjoying the things I normally do, while I let my body get back to normal, I am just feeling thankful tonight, of the gifts that God has given me....
~Em
Praying for Transplant Patients
One of the cool things about my room here in the hospital, is that it is directly below the helicopter pad. Because this hospital does not have an ER and is mostly a surgical hospital, the helicopters coming in are either patients getting transplants or organs being flown in for a patient to receive...I learn so much from the nurses I get to chat with :).
So just now, at 10am I saw and heard a helicopter coming in and landing above me. I have no idea who or what is in that helicopter, but I feel called to pray for the patients all around the world who are waiting for transplants for any organ, or receiving transplants either at this hospital or anywhere else. What a miracle it is to have a transplant and I can't imagine the emotions involved in both the patient and the donor's family. My prayers and heart are with them all, right now :).
~Em
So just now, at 10am I saw and heard a helicopter coming in and landing above me. I have no idea who or what is in that helicopter, but I feel called to pray for the patients all around the world who are waiting for transplants for any organ, or receiving transplants either at this hospital or anywhere else. What a miracle it is to have a transplant and I can't imagine the emotions involved in both the patient and the donor's family. My prayers and heart are with them all, right now :).
~Em
Sunday, August 24, 2008
Getting Used to USC
After spending a night & 2 days on a normal floor here, I am starting to adjust and get used to the ways of USC...it's been great :).
I've had excellent care from nurses, and staff, and I feel like they really consider the needs of a CF patient here. I am starting to feel more comfortable, and I am also really glad my doctors are taking the time to get to know me as I'm here- I feel so blessed to have good care.
As I get used to it here, I've noticed a few differences that I enjoy here (not that I didn't have good care at my old hospital, but being here at an adult clinic for CF really makes a big difference). One of the biggest differences here at USC, is that I get freedom to live a more 'normal' life. I am, of course, doing long breathing treatments to clear my lungs, and i'm on 3 antibiotics and a constant IV, but despite that- they give me some freedom to walk around and go outside and enjoy the sunshine as long as CF-contact precautions are taken (meaning I wear a mask and gloves)! I was SO excited to go outside today :). At my previous hospital- they were more strict because they didn't treat CF on a regular basis. There, I was usually confined to my room and was barely given permission to go walk in the hall...
I'm glad that here at USC I don't have to wait 7 days to feel the warmth of the sun :).
~Em
I've had excellent care from nurses, and staff, and I feel like they really consider the needs of a CF patient here. I am starting to feel more comfortable, and I am also really glad my doctors are taking the time to get to know me as I'm here- I feel so blessed to have good care.
As I get used to it here, I've noticed a few differences that I enjoy here (not that I didn't have good care at my old hospital, but being here at an adult clinic for CF really makes a big difference). One of the biggest differences here at USC, is that I get freedom to live a more 'normal' life. I am, of course, doing long breathing treatments to clear my lungs, and i'm on 3 antibiotics and a constant IV, but despite that- they give me some freedom to walk around and go outside and enjoy the sunshine as long as CF-contact precautions are taken (meaning I wear a mask and gloves)! I was SO excited to go outside today :). At my previous hospital- they were more strict because they didn't treat CF on a regular basis. There, I was usually confined to my room and was barely given permission to go walk in the hall...
I'm glad that here at USC I don't have to wait 7 days to feel the warmth of the sun :).
~Em
Saturday, August 23, 2008
Out of the ICU :)
Yep...as per my last post, I made the move today out of the ICU because my new meds are working great and I've had no negative reactions to them :). I'm now on a med-surg floor with great nurses and great care.
I am glad to be in a place that is much quieter and much more calm- i've had a pretty relaxing day...I was even allowed to go outside and enjoy some fresh air! Yay!
I'll have more to post tomorrow about how i'm doing and how i'm feeling (physically and emotionally), but for now, I'm pretty wiped out after my lack-of-sleep last night and i'm pretty dazed... so i'm headed to sleep :)
Goodnight,
Em
I am glad to be in a place that is much quieter and much more calm- i've had a pretty relaxing day...I was even allowed to go outside and enjoy some fresh air! Yay!
I'll have more to post tomorrow about how i'm doing and how i'm feeling (physically and emotionally), but for now, I'm pretty wiped out after my lack-of-sleep last night and i'm pretty dazed... so i'm headed to sleep :)
Goodnight,
Em
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