Hospital stays

[tara]

Hi Sarah,

You and I (as with much of the CF crowd) have a lot of the same complaints. Here's what I've learned.

Doctor's orders are followed to a T. So..... instead of having your doctor write abx q8, ask for antibiotics at specific times. This has to be doctor's orders. I have my doctor also leave more time at night, and squish the daytime meds together thus leaving me longer to sleep. AND when it's possible I run two abx at a time to condense the number of hours I'm actually hooked up to a machine. (I get a double lumen PICC line) So here's a sample schedule

7 AM Merrepenum and Ceftaz IV
2 PM Merrepenum and Ceftaz IV
3PM Tobramycin
9PM Merrepenum and Ceftaz IV

See how the Q8 now leaves me with 9 hours to sleep (theoretically I'm done at 10PM and I don't start again until 7AM.)

I also get doctors orders for NO vitals, NO weights, NO I/O's, NO labs from 10PM to 7AM. In addition to those doctor's orders I post a sign on my door each night with the same requests. It usually works too. (But I did have one NA that couldn't read last time...argh)

I'm not a fan of manual CPT since I have the vest. I bring my own vest (the SmartVest) with me to the hospital. Before the first use it has to be checked out by a hospital engineer to be sure I'm not going to blow the circuits of the hospital or something. But it's worth it. I get my little pink safety sticker on it and I'm all set to go.

My CF doc is also very on board with 4x/day CPT while in the house. She held a meeting with the RTs and they have come up with a simple plan to "schedule" nebs/vest with us. So during my first day of admission the first RT in my room writes down my schedule (the one I want!) and they always show up on time. This makes planning visits with guests easier!

And like some have suggested the easiest way for me to clear my lungs is the vest and HTS. If you find it works for you, get your doctor to prescribe more HTS than twice a day while you're in the big house (if you can hack it).

So that's basically how I cope with being an over scheduled OCD type in the hospital. They pretty much let me schedule everything and it makes me feel a little bit more at home. At this stage in my life I actually get MORE rest in the hospital than I do at home because at home, I'm chasing two preschoolers around.

 

[tara]

Hi Sarah,

You and I (as with much of the CF crowd) have a lot of the same complaints. Here's what I've learned.

Doctor's orders are followed to a T. So..... instead of having your doctor write abx q8, ask for antibiotics at specific times. This has to be doctor's orders. I have my doctor also leave more time at night, and squish the daytime meds together thus leaving me longer to sleep. AND when it's possible I run two abx at a time to condense the number of hours I'm actually hooked up to a machine. (I get a double lumen PICC line) So here's a sample schedule

7 AM Merrepenum and Ceftaz IV
2 PM Merrepenum and Ceftaz IV
3PM Tobramycin
9PM Merrepenum and Ceftaz IV

See how the Q8 now leaves me with 9 hours to sleep (theoretically I'm done at 10PM and I don't start again until 7AM.)

I also get doctors orders for NO vitals, NO weights, NO I/O's, NO labs from 10PM to 7AM. In addition to those doctor's orders I post a sign on my door each night with the same requests. It usually works too. (But I did have one NA that couldn't read last time...argh)

I'm not a fan of manual CPT since I have the vest. I bring my own vest (the SmartVest) with me to the hospital. Before the first use it has to be checked out by a hospital engineer to be sure I'm not going to blow the circuits of the hospital or something. But it's worth it. I get my little pink safety sticker on it and I'm all set to go.

My CF doc is also very on board with 4x/day CPT while in the house. She held a meeting with the RTs and they have come up with a simple plan to "schedule" nebs/vest with us. So during my first day of admission the first RT in my room writes down my schedule (the one I want!) and they always show up on time. This makes planning visits with guests easier!

And like some have suggested the easiest way for me to clear my lungs is the vest and HTS. If you find it works for you, get your doctor to prescribe more HTS than twice a day while you're in the big house (if you can hack it).

So that's basically how I cope with being an over scheduled OCD type in the hospital. They pretty much let me schedule everything and it makes me feel a little bit more at home. At this stage in my life I actually get MORE rest in the hospital than I do at home because at home, I'm chasing two preschoolers around.

 

[tara]

Hi Sarah,

You and I (as with much of the CF crowd) have a lot of the same complaints. Here's what I've learned.

Doctor's orders are followed to a T. So..... instead of having your doctor write abx q8, ask for antibiotics at specific times. This has to be doctor's orders. I have my doctor also leave more time at night, and squish the daytime meds together thus leaving me longer to sleep. AND when it's possible I run two abx at a time to condense the number of hours I'm actually hooked up to a machine. (I get a double lumen PICC line) So here's a sample schedule

7 AM Merrepenum and Ceftaz IV
2 PM Merrepenum and Ceftaz IV
3PM Tobramycin
9PM Merrepenum and Ceftaz IV

See how the Q8 now leaves me with 9 hours to sleep (theoretically I'm done at 10PM and I don't start again until 7AM.)

I also get doctors orders for NO vitals, NO weights, NO I/O's, NO labs from 10PM to 7AM. In addition to those doctor's orders I post a sign on my door each night with the same requests. It usually works too. (But I did have one NA that couldn't read last time...argh)

I'm not a fan of manual CPT since I have the vest. I bring my own vest (the SmartVest) with me to the hospital. Before the first use it has to be checked out by a hospital engineer to be sure I'm not going to blow the circuits of the hospital or something. But it's worth it. I get my little pink safety sticker on it and I'm all set to go.

My CF doc is also very on board with 4x/day CPT while in the house. She held a meeting with the RTs and they have come up with a simple plan to "schedule" nebs/vest with us. So during my first day of admission the first RT in my room writes down my schedule (the one I want!) and they always show up on time. This makes planning visits with guests easier!

And like some have suggested the easiest way for me to clear my lungs is the vest and HTS. If you find it works for you, get your doctor to prescribe more HTS than twice a day while you're in the big house (if you can hack it).

So that's basically how I cope with being an over scheduled OCD type in the hospital. They pretty much let me schedule everything and it makes me feel a little bit more at home. At this stage in my life I actually get MORE rest in the hospital than I do at home because at home, I'm chasing two preschoolers around.

 

[tara]

Hi Sarah,

You and I (as with much of the CF crowd) have a lot of the same complaints. Here's what I've learned.

Doctor's orders are followed to a T. So..... instead of having your doctor write abx q8, ask for antibiotics at specific times. This has to be doctor's orders. I have my doctor also leave more time at night, and squish the daytime meds together thus leaving me longer to sleep. AND when it's possible I run two abx at a time to condense the number of hours I'm actually hooked up to a machine. (I get a double lumen PICC line) So here's a sample schedule

7 AM Merrepenum and Ceftaz IV
2 PM Merrepenum and Ceftaz IV
3PM Tobramycin
9PM Merrepenum and Ceftaz IV

See how the Q8 now leaves me with 9 hours to sleep (theoretically I'm done at 10PM and I don't start again until 7AM.)

I also get doctors orders for NO vitals, NO weights, NO I/O's, NO labs from 10PM to 7AM. In addition to those doctor's orders I post a sign on my door each night with the same requests. It usually works too. (But I did have one NA that couldn't read last time...argh)

I'm not a fan of manual CPT since I have the vest. I bring my own vest (the SmartVest) with me to the hospital. Before the first use it has to be checked out by a hospital engineer to be sure I'm not going to blow the circuits of the hospital or something. But it's worth it. I get my little pink safety sticker on it and I'm all set to go.

My CF doc is also very on board with 4x/day CPT while in the house. She held a meeting with the RTs and they have come up with a simple plan to "schedule" nebs/vest with us. So during my first day of admission the first RT in my room writes down my schedule (the one I want!) and they always show up on time. This makes planning visits with guests easier!

And like some have suggested the easiest way for me to clear my lungs is the vest and HTS. If you find it works for you, get your doctor to prescribe more HTS than twice a day while you're in the big house (if you can hack it).

So that's basically how I cope with being an over scheduled OCD type in the hospital. They pretty much let me schedule everything and it makes me feel a little bit more at home. At this stage in my life I actually get MORE rest in the hospital than I do at home because at home, I'm chasing two preschoolers around.

 

[tara]

Hi Sarah,
<br />
<br />You and I (as with much of the CF crowd) have a lot of the same complaints. Here's what I've learned.
<br />
<br />Doctor's orders are followed to a T. So..... instead of having your doctor write abx q8, ask for antibiotics at specific times. This has to be doctor's orders. I have my doctor also leave more time at night, and squish the daytime meds together thus leaving me longer to sleep. AND when it's possible I run two abx at a time to condense the number of hours I'm actually hooked up to a machine. (I get a double lumen PICC line) So here's a sample schedule
<br />
<br />7 AM Merrepenum and Ceftaz IV
<br />2 PM Merrepenum and Ceftaz IV
<br />3PM Tobramycin
<br />9PM Merrepenum and Ceftaz IV
<br />
<br />See how the Q8 now leaves me with 9 hours to sleep (theoretically I'm done at 10PM and I don't start again until 7AM.)
<br />
<br />I also get doctors orders for NO vitals, NO weights, NO I/O's, NO labs from 10PM to 7AM. In addition to those doctor's orders I post a sign on my door each night with the same requests. It usually works too. (But I did have one NA that couldn't read last time...argh)
<br />
<br />I'm not a fan of manual CPT since I have the vest. I bring my own vest (the SmartVest) with me to the hospital. Before the first use it has to be checked out by a hospital engineer to be sure I'm not going to blow the circuits of the hospital or something. But it's worth it. I get my little pink safety sticker on it and I'm all set to go.
<br />
<br />My CF doc is also very on board with 4x/day CPT while in the house. She held a meeting with the RTs and they have come up with a simple plan to "schedule" nebs/vest with us. So during my first day of admission the first RT in my room writes down my schedule (the one I want!) and they always show up on time. This makes planning visits with guests easier!
<br />
<br />And like some have suggested the easiest way for me to clear my lungs is the vest and HTS. If you find it works for you, get your doctor to prescribe more HTS than twice a day while you're in the big house (if you can hack it).
<br />
<br />So that's basically how I cope with being an over scheduled OCD type in the hospital. They pretty much let me schedule everything and it makes me feel a little bit more at home. At this stage in my life I actually get MORE rest in the hospital than I do at home because at home, I'm chasing two preschoolers around.
<br />
<br />
<br />

 

[sue35]

I also have horrible feelings about the hospital. Last time they gave me 70mg of prednisone accidently! I completely break down when I am there to the point where my doctor worries about me being there. Because of this he goes out of his way to make sure I don't go to the hospital.

If I have to go, I also have him talk to the nurses about staying away from me at night so I can rest, and to give me more freedom regarding my medicine.

You would think we would get used to the hospital but no!

 

[sue35]

I also have horrible feelings about the hospital. Last time they gave me 70mg of prednisone accidently! I completely break down when I am there to the point where my doctor worries about me being there. Because of this he goes out of his way to make sure I don't go to the hospital.

If I have to go, I also have him talk to the nurses about staying away from me at night so I can rest, and to give me more freedom regarding my medicine.

You would think we would get used to the hospital but no!

 

[sue35]

I also have horrible feelings about the hospital. Last time they gave me 70mg of prednisone accidently! I completely break down when I am there to the point where my doctor worries about me being there. Because of this he goes out of his way to make sure I don't go to the hospital.

If I have to go, I also have him talk to the nurses about staying away from me at night so I can rest, and to give me more freedom regarding my medicine.

You would think we would get used to the hospital but no!

 

[sue35]

I also have horrible feelings about the hospital. Last time they gave me 70mg of prednisone accidently! I completely break down when I am there to the point where my doctor worries about me being there. Because of this he goes out of his way to make sure I don't go to the hospital.

If I have to go, I also have him talk to the nurses about staying away from me at night so I can rest, and to give me more freedom regarding my medicine.

You would think we would get used to the hospital but no!

 

[sue35]

I also have horrible feelings about the hospital. Last time they gave me 70mg of prednisone accidently! I completely break down when I am there to the point where my doctor worries about me being there. Because of this he goes out of his way to make sure I don't go to the hospital.
<br />
<br />If I have to go, I also have him talk to the nurses about staying away from me at night so I can rest, and to give me more freedom regarding my medicine.
<br />
<br />You would think we would get used to the hospital but no!

 

[Sevenstars]

Augh, the beds!!! I thought I was the only one that hated them so much. I get drenched too. To combat this, I usually put down another sheet, or sit in the chair as much as possible. Then when I go to bed, my sheets are nice and cool. (for about 5 minutes anyway) I have also been known to sleep in the chair if it's a recliner, but nurses don't like that too much. <img src="">

I have such mixed views about the hopsital... if the stay goes well I actually LOVE the hospital... well as much as you can love the hospital. I get to rest all day, read, recuperate, and eat about 8 meals without having to cook them for myself. I also get 4x good respiratory treatments (with o2, which I can't get covered at home) and it feels great. If it goes BAD, though, then it's usually terribly bad, and I sit there spazzing out and wishing I could leave. <img src="">

The thing is that we are so so used to our own treatment, our own schedules and ways of doing things... when orders aren't written properly then everything gets )#(*$ed and we feel out of sorts. The key to avoiding this, I've found, is making sure your orders are written how you want them to the LETTER!

This means, say, if you are diabetic... you don't want to be on "their" diabetic diet because it will mean horrible food/portions and they will hide your food until you get a sugar check. This means specifying what type of CPT you want, and how many times a day. Specifying what type of albuterol you want (puffer? neb?) and how many times a day. Even stuff like tara said - not being disturbed at night - will put your mind at ease. What I do is talk to my doctor about this beforehand and make sure it's ALL written out and ready to go before I even get admitted... then admit day is generally stress-free. Think of it like going to a restaurant and making sure the chef knows exactly what you want. <img src="">

To distract myself, I do what most of you guys do. Take my computer and play on the internet of course. <img src=""> I also get a lot of reading done.

Are you in the hospital now? I hope you feel better soon. /sending cool, dry sheets your way!

 

[Sevenstars]

Augh, the beds!!! I thought I was the only one that hated them so much. I get drenched too. To combat this, I usually put down another sheet, or sit in the chair as much as possible. Then when I go to bed, my sheets are nice and cool. (for about 5 minutes anyway) I have also been known to sleep in the chair if it's a recliner, but nurses don't like that too much. <img src="">

I have such mixed views about the hopsital... if the stay goes well I actually LOVE the hospital... well as much as you can love the hospital. I get to rest all day, read, recuperate, and eat about 8 meals without having to cook them for myself. I also get 4x good respiratory treatments (with o2, which I can't get covered at home) and it feels great. If it goes BAD, though, then it's usually terribly bad, and I sit there spazzing out and wishing I could leave. <img src="">

The thing is that we are so so used to our own treatment, our own schedules and ways of doing things... when orders aren't written properly then everything gets )#(*$ed and we feel out of sorts. The key to avoiding this, I've found, is making sure your orders are written how you want them to the LETTER!

This means, say, if you are diabetic... you don't want to be on "their" diabetic diet because it will mean horrible food/portions and they will hide your food until you get a sugar check. This means specifying what type of CPT you want, and how many times a day. Specifying what type of albuterol you want (puffer? neb?) and how many times a day. Even stuff like tara said - not being disturbed at night - will put your mind at ease. What I do is talk to my doctor about this beforehand and make sure it's ALL written out and ready to go before I even get admitted... then admit day is generally stress-free. Think of it like going to a restaurant and making sure the chef knows exactly what you want. <img src="">

To distract myself, I do what most of you guys do. Take my computer and play on the internet of course. <img src=""> I also get a lot of reading done.

Are you in the hospital now? I hope you feel better soon. /sending cool, dry sheets your way!

 

[Sevenstars]

Augh, the beds!!! I thought I was the only one that hated them so much. I get drenched too. To combat this, I usually put down another sheet, or sit in the chair as much as possible. Then when I go to bed, my sheets are nice and cool. (for about 5 minutes anyway) I have also been known to sleep in the chair if it's a recliner, but nurses don't like that too much. <img src="">

I have such mixed views about the hopsital... if the stay goes well I actually LOVE the hospital... well as much as you can love the hospital. I get to rest all day, read, recuperate, and eat about 8 meals without having to cook them for myself. I also get 4x good respiratory treatments (with o2, which I can't get covered at home) and it feels great. If it goes BAD, though, then it's usually terribly bad, and I sit there spazzing out and wishing I could leave. <img src="">

The thing is that we are so so used to our own treatment, our own schedules and ways of doing things... when orders aren't written properly then everything gets )#(*$ed and we feel out of sorts. The key to avoiding this, I've found, is making sure your orders are written how you want them to the LETTER!

This means, say, if you are diabetic... you don't want to be on "their" diabetic diet because it will mean horrible food/portions and they will hide your food until you get a sugar check. This means specifying what type of CPT you want, and how many times a day. Specifying what type of albuterol you want (puffer? neb?) and how many times a day. Even stuff like tara said - not being disturbed at night - will put your mind at ease. What I do is talk to my doctor about this beforehand and make sure it's ALL written out and ready to go before I even get admitted... then admit day is generally stress-free. Think of it like going to a restaurant and making sure the chef knows exactly what you want. <img src="">

To distract myself, I do what most of you guys do. Take my computer and play on the internet of course. <img src=""> I also get a lot of reading done.

Are you in the hospital now? I hope you feel better soon. /sending cool, dry sheets your way!

 

[Sevenstars]

Augh, the beds!!! I thought I was the only one that hated them so much. I get drenched too. To combat this, I usually put down another sheet, or sit in the chair as much as possible. Then when I go to bed, my sheets are nice and cool. (for about 5 minutes anyway) I have also been known to sleep in the chair if it's a recliner, but nurses don't like that too much. <img src="">

I have such mixed views about the hopsital... if the stay goes well I actually LOVE the hospital... well as much as you can love the hospital. I get to rest all day, read, recuperate, and eat about 8 meals without having to cook them for myself. I also get 4x good respiratory treatments (with o2, which I can't get covered at home) and it feels great. If it goes BAD, though, then it's usually terribly bad, and I sit there spazzing out and wishing I could leave. <img src="">

The thing is that we are so so used to our own treatment, our own schedules and ways of doing things... when orders aren't written properly then everything gets )#(*$ed and we feel out of sorts. The key to avoiding this, I've found, is making sure your orders are written how you want them to the LETTER!

This means, say, if you are diabetic... you don't want to be on "their" diabetic diet because it will mean horrible food/portions and they will hide your food until you get a sugar check. This means specifying what type of CPT you want, and how many times a day. Specifying what type of albuterol you want (puffer? neb?) and how many times a day. Even stuff like tara said - not being disturbed at night - will put your mind at ease. What I do is talk to my doctor about this beforehand and make sure it's ALL written out and ready to go before I even get admitted... then admit day is generally stress-free. Think of it like going to a restaurant and making sure the chef knows exactly what you want. <img src="">

To distract myself, I do what most of you guys do. Take my computer and play on the internet of course. <img src=""> I also get a lot of reading done.

Are you in the hospital now? I hope you feel better soon. /sending cool, dry sheets your way!

 

[Sevenstars]

Augh, the beds!!! I thought I was the only one that hated them so much. I get drenched too. To combat this, I usually put down another sheet, or sit in the chair as much as possible. Then when I go to bed, my sheets are nice and cool. (for about 5 minutes anyway) I have also been known to sleep in the chair if it's a recliner, but nurses don't like that too much. <img src="">
<br />
<br />I have such mixed views about the hopsital... if the stay goes well I actually LOVE the hospital... well as much as you can love the hospital. I get to rest all day, read, recuperate, and eat about 8 meals without having to cook them for myself. I also get 4x good respiratory treatments (with o2, which I can't get covered at home) and it feels great. If it goes BAD, though, then it's usually terribly bad, and I sit there spazzing out and wishing I could leave. <img src="">
<br />
<br />The thing is that we are so so used to our own treatment, our own schedules and ways of doing things... when orders aren't written properly then everything gets )#(*$ed and we feel out of sorts. The key to avoiding this, I've found, is making sure your orders are written how you want them to the LETTER!
<br />
<br />This means, say, if you are diabetic... you don't want to be on "their" diabetic diet because it will mean horrible food/portions and they will hide your food until you get a sugar check. This means specifying what type of CPT you want, and how many times a day. Specifying what type of albuterol you want (puffer? neb?) and how many times a day. Even stuff like tara said - not being disturbed at night - will put your mind at ease. What I do is talk to my doctor about this beforehand and make sure it's ALL written out and ready to go before I even get admitted... then admit day is generally stress-free. Think of it like going to a restaurant and making sure the chef knows exactly what you want. <img src="">
<br />
<br />To distract myself, I do what most of you guys do. Take my computer and play on the internet of course. <img src=""> I also get a lot of reading done.
<br />
<br />Are you in the hospital now? I hope you feel better soon. /sending cool, dry sheets your way!

 

[idajune]

Thank you everyone for your responses. I realize I am not alone in how I feel, I guess I just have request more than I have in the past. I made a deal with the doctor so I have until Friday to start feeling better or he is going to throw me in the clinker. On an interesting note I asked about the difference in the Vest versus the Respiratech yesterday and today i get to pick up the Respiratech (or whatever it is) and give it a try for a few weeks. We shall see what happens. I really do appreciate all your suggestions, I will definitely try these suggestions and maybe then my stays won't be so frustrating for me.

 

[idajune]

Thank you everyone for your responses. I realize I am not alone in how I feel, I guess I just have request more than I have in the past. I made a deal with the doctor so I have until Friday to start feeling better or he is going to throw me in the clinker. On an interesting note I asked about the difference in the Vest versus the Respiratech yesterday and today i get to pick up the Respiratech (or whatever it is) and give it a try for a few weeks. We shall see what happens. I really do appreciate all your suggestions, I will definitely try these suggestions and maybe then my stays won't be so frustrating for me.

 

[idajune]

Thank you everyone for your responses. I realize I am not alone in how I feel, I guess I just have request more than I have in the past. I made a deal with the doctor so I have until Friday to start feeling better or he is going to throw me in the clinker. On an interesting note I asked about the difference in the Vest versus the Respiratech yesterday and today i get to pick up the Respiratech (or whatever it is) and give it a try for a few weeks. We shall see what happens. I really do appreciate all your suggestions, I will definitely try these suggestions and maybe then my stays won't be so frustrating for me.

 

[idajune]

Thank you everyone for your responses. I realize I am not alone in how I feel, I guess I just have request more than I have in the past. I made a deal with the doctor so I have until Friday to start feeling better or he is going to throw me in the clinker. On an interesting note I asked about the difference in the Vest versus the Respiratech yesterday and today i get to pick up the Respiratech (or whatever it is) and give it a try for a few weeks. We shall see what happens. I really do appreciate all your suggestions, I will definitely try these suggestions and maybe then my stays won't be so frustrating for me.

 

[idajune]

Thank you everyone for your responses. I realize I am not alone in how I feel, I guess I just have request more than I have in the past. I made a deal with the doctor so I have until Friday to start feeling better or he is going to throw me in the clinker. On an interesting note I asked about the difference in the Vest versus the Respiratech yesterday and today i get to pick up the Respiratech (or whatever it is) and give it a try for a few weeks. We shall see what happens. I really do appreciate all your suggestions, I will definitely try these suggestions and maybe then my stays won't be so frustrating for me.