First hospital stay starts today

Stillgoing · Oct 22, 2008

Thanks to all of you for such great ideas.

I will definitely bring her enzymes with me. I hadn't thought of that. I figured they would be ready for us since they had 24 hours notice of our arrival. That probably isn't how it works, is it?

I didn't think of bringing wipes either. What a great idea! She doesn't need to pick up a new bug a the hospital.
They will be starting a PICC line tomorrow. The good thing for her is that they will insert the PICC line while she is out for the bronch. (I act like I know what I am talking about here. I am really just echoing what the doctor said.) She will get stuck twice - once today to start the IVs and then again tomorrow - but she will only be awake for one of them.

Gina mentioned doing PT once a day - I never even thought of that. I had been racking my brain trying to think of ways to keep her physically active. I never thought of it being included as part of the program. I will be sure to ask about that.

The doctor talked about doing four treatments a day. I am hoping they will be during normal waking hours. I don't want them to wake her up in the middle of the night for a treatment. Is that unreasonable?

Thanks for all your great ideas!!

Kathleen
Mom to Lauren 7 w/CF and JJ 9 no CF

Stillgoing · Oct 22, 2008

Thanks to all of you for such great ideas.

I will definitely bring her enzymes with me. I hadn't thought of that. I figured they would be ready for us since they had 24 hours notice of our arrival. That probably isn't how it works, is it?

I didn't think of bringing wipes either. What a great idea! She doesn't need to pick up a new bug a the hospital.
They will be starting a PICC line tomorrow. The good thing for her is that they will insert the PICC line while she is out for the bronch. (I act like I know what I am talking about here. I am really just echoing what the doctor said.) She will get stuck twice - once today to start the IVs and then again tomorrow - but she will only be awake for one of them.

Gina mentioned doing PT once a day - I never even thought of that. I had been racking my brain trying to think of ways to keep her physically active. I never thought of it being included as part of the program. I will be sure to ask about that.

The doctor talked about doing four treatments a day. I am hoping they will be during normal waking hours. I don't want them to wake her up in the middle of the night for a treatment. Is that unreasonable?

Thanks for all your great ideas!!

Kathleen
Mom to Lauren 7 w/CF and JJ 9 no CF

Stillgoing · Oct 22, 2008

Thanks to all of you for such great ideas.

I will definitely bring her enzymes with me. I hadn't thought of that. I figured they would be ready for us since they had 24 hours notice of our arrival. That probably isn't how it works, is it?

I didn't think of bringing wipes either. What a great idea! She doesn't need to pick up a new bug a the hospital.
They will be starting a PICC line tomorrow. The good thing for her is that they will insert the PICC line while she is out for the bronch. (I act like I know what I am talking about here. I am really just echoing what the doctor said.) She will get stuck twice - once today to start the IVs and then again tomorrow - but she will only be awake for one of them.

Gina mentioned doing PT once a day - I never even thought of that. I had been racking my brain trying to think of ways to keep her physically active. I never thought of it being included as part of the program. I will be sure to ask about that.

The doctor talked about doing four treatments a day. I am hoping they will be during normal waking hours. I don't want them to wake her up in the middle of the night for a treatment. Is that unreasonable?

Thanks for all your great ideas!!

Kathleen
Mom to Lauren 7 w/CF and JJ 9 no CF

Stillgoing · Oct 22, 2008

Thanks to all of you for such great ideas.

I will definitely bring her enzymes with me. I hadn't thought of that. I figured they would be ready for us since they had 24 hours notice of our arrival. That probably isn't how it works, is it?

I didn't think of bringing wipes either. What a great idea! She doesn't need to pick up a new bug a the hospital.
They will be starting a PICC line tomorrow. The good thing for her is that they will insert the PICC line while she is out for the bronch. (I act like I know what I am talking about here. I am really just echoing what the doctor said.) She will get stuck twice - once today to start the IVs and then again tomorrow - but she will only be awake for one of them.

Gina mentioned doing PT once a day - I never even thought of that. I had been racking my brain trying to think of ways to keep her physically active. I never thought of it being included as part of the program. I will be sure to ask about that.

The doctor talked about doing four treatments a day. I am hoping they will be during normal waking hours. I don't want them to wake her up in the middle of the night for a treatment. Is that unreasonable?

Thanks for all your great ideas!!

Kathleen
Mom to Lauren 7 w/CF and JJ 9 no CF

Stillgoing · Oct 22, 2008

Thanks to all of you for such great ideas.
 
 I will definitely bring her enzymes with me. I hadn't thought of that. I figured they would be ready for us since they had 24 hours notice of our arrival. That probably isn't how it works, is it?
 
 I didn't think of bringing wipes either. What a great idea! She doesn't need to pick up a new bug a the hospital.
 They will be starting a PICC line tomorrow. The good thing for her is that they will insert the PICC line while she is out for the bronch. (I act like I know what I am talking about here. I am really just echoing what the doctor said.) She will get stuck twice - once today to start the IVs and then again tomorrow - but she will only be awake for one of them.
 
 Gina mentioned doing PT once a day - I never even thought of that. I had been racking my brain trying to think of ways to keep her physically active. I never thought of it being included as part of the program. I will be sure to ask about that.
 
 The doctor talked about doing four treatments a day. I am hoping they will be during normal waking hours. I don't want them to wake her up in the middle of the night for a treatment. Is that unreasonable?
 
 Thanks for all your great ideas!!
 
 Kathleen
 Mom to Lauren 7 w/CF and JJ 9 no CF

Liza · Oct 22, 2008

Hi Kathleen, Everyone covered it all so well I don't think I have much to add. I never brought our own sheets because the hospital beds require extra long sheets. Twins are a struggle to get on. And if they change the bed when you are not there in the room your sheets may just disappear. However, we always brought in our own blanket/comforter and pillow. If she's going to be in for a full course (usually about 10-14 days) be sure to let her teacher know and ask if they can have the class make some get well cards. You can pick them up and hang them in her room. Most rooms have a bulletin board but that won't be big enough. Look and see if there are thumb tac holes in the walls, if so grab some thumb tacs and some string (yarn will stretch too much) and create a hanging line to hang the cards by clothes pins. I forgot to tell you to get those too. If there are no holes you can use tape. If her room has a window, ask child life if she can paint it. We have been to several hospitals an no one has ever said "no".

As for a PT/neb schedule. They WILL try and do it all hours of the night sometimes. Ask the doc at check in or the next day, how crucial it is that it be evenly distributed. Figure our what four times a day would be good. We always told them no treatments before 8AM but (and my girls were older) they had up until 10pm and 11pm when they were even older. Ask RT what their schedule is for her, then if they give you bad times, tell them what you want.

Also, monitor when they come in for vitals and stuff cause they will sometimes not coordinate these things and it's ridiculous that they come in spaced a half hour apart, just as she's taking a nap/resting. Some things like a weight check at 6AM can be put off until a more reasonable time.

If she's at a children's hospital, they will have so much for her to do, it is like a mini vacation. My youngest was so into riding her bike that we brought in her bike and my husband's trainer to put it on and she would just peddle away while playing video games (something we didn't have at home). Not all hospitals are updated with DVD players but most all have VCR's. We have movies that we reserved only for hospital use. Most child life rooms have movies to borrow as well. I'd only bring one favorite stuffy, as she will most likely get a couple while she is in.

Lastly, you will take home more than you brought in!<img src=""> Crafts, gifts from visitors, as well as gifts from child life and hospital volunteers.

Liza · Oct 22, 2008

Hi Kathleen, Everyone covered it all so well I don't think I have much to add. I never brought our own sheets because the hospital beds require extra long sheets. Twins are a struggle to get on. And if they change the bed when you are not there in the room your sheets may just disappear. However, we always brought in our own blanket/comforter and pillow. If she's going to be in for a full course (usually about 10-14 days) be sure to let her teacher know and ask if they can have the class make some get well cards. You can pick them up and hang them in her room. Most rooms have a bulletin board but that won't be big enough. Look and see if there are thumb tac holes in the walls, if so grab some thumb tacs and some string (yarn will stretch too much) and create a hanging line to hang the cards by clothes pins. I forgot to tell you to get those too. If there are no holes you can use tape. If her room has a window, ask child life if she can paint it. We have been to several hospitals an no one has ever said "no".

As for a PT/neb schedule. They WILL try and do it all hours of the night sometimes. Ask the doc at check in or the next day, how crucial it is that it be evenly distributed. Figure our what four times a day would be good. We always told them no treatments before 8AM but (and my girls were older) they had up until 10pm and 11pm when they were even older. Ask RT what their schedule is for her, then if they give you bad times, tell them what you want.

Also, monitor when they come in for vitals and stuff cause they will sometimes not coordinate these things and it's ridiculous that they come in spaced a half hour apart, just as she's taking a nap/resting. Some things like a weight check at 6AM can be put off until a more reasonable time.

If she's at a children's hospital, they will have so much for her to do, it is like a mini vacation. My youngest was so into riding her bike that we brought in her bike and my husband's trainer to put it on and she would just peddle away while playing video games (something we didn't have at home). Not all hospitals are updated with DVD players but most all have VCR's. We have movies that we reserved only for hospital use. Most child life rooms have movies to borrow as well. I'd only bring one favorite stuffy, as she will most likely get a couple while she is in.

Lastly, you will take home more than you brought in!<img src=""> Crafts, gifts from visitors, as well as gifts from child life and hospital volunteers.

Liza · Oct 22, 2008

Hi Kathleen, Everyone covered it all so well I don't think I have much to add. I never brought our own sheets because the hospital beds require extra long sheets. Twins are a struggle to get on. And if they change the bed when you are not there in the room your sheets may just disappear. However, we always brought in our own blanket/comforter and pillow. If she's going to be in for a full course (usually about 10-14 days) be sure to let her teacher know and ask if they can have the class make some get well cards. You can pick them up and hang them in her room. Most rooms have a bulletin board but that won't be big enough. Look and see if there are thumb tac holes in the walls, if so grab some thumb tacs and some string (yarn will stretch too much) and create a hanging line to hang the cards by clothes pins. I forgot to tell you to get those too. If there are no holes you can use tape. If her room has a window, ask child life if she can paint it. We have been to several hospitals an no one has ever said "no".

As for a PT/neb schedule. They WILL try and do it all hours of the night sometimes. Ask the doc at check in or the next day, how crucial it is that it be evenly distributed. Figure our what four times a day would be good. We always told them no treatments before 8AM but (and my girls were older) they had up until 10pm and 11pm when they were even older. Ask RT what their schedule is for her, then if they give you bad times, tell them what you want.

Also, monitor when they come in for vitals and stuff cause they will sometimes not coordinate these things and it's ridiculous that they come in spaced a half hour apart, just as she's taking a nap/resting. Some things like a weight check at 6AM can be put off until a more reasonable time.

If she's at a children's hospital, they will have so much for her to do, it is like a mini vacation. My youngest was so into riding her bike that we brought in her bike and my husband's trainer to put it on and she would just peddle away while playing video games (something we didn't have at home). Not all hospitals are updated with DVD players but most all have VCR's. We have movies that we reserved only for hospital use. Most child life rooms have movies to borrow as well. I'd only bring one favorite stuffy, as she will most likely get a couple while she is in.

Lastly, you will take home more than you brought in!<img src=""> Crafts, gifts from visitors, as well as gifts from child life and hospital volunteers.

Liza · Oct 22, 2008

Hi Kathleen, Everyone covered it all so well I don't think I have much to add. I never brought our own sheets because the hospital beds require extra long sheets. Twins are a struggle to get on. And if they change the bed when you are not there in the room your sheets may just disappear. However, we always brought in our own blanket/comforter and pillow. If she's going to be in for a full course (usually about 10-14 days) be sure to let her teacher know and ask if they can have the class make some get well cards. You can pick them up and hang them in her room. Most rooms have a bulletin board but that won't be big enough. Look and see if there are thumb tac holes in the walls, if so grab some thumb tacs and some string (yarn will stretch too much) and create a hanging line to hang the cards by clothes pins. I forgot to tell you to get those too. If there are no holes you can use tape. If her room has a window, ask child life if she can paint it. We have been to several hospitals an no one has ever said "no".

As for a PT/neb schedule. They WILL try and do it all hours of the night sometimes. Ask the doc at check in or the next day, how crucial it is that it be evenly distributed. Figure our what four times a day would be good. We always told them no treatments before 8AM but (and my girls were older) they had up until 10pm and 11pm when they were even older. Ask RT what their schedule is for her, then if they give you bad times, tell them what you want.

Also, monitor when they come in for vitals and stuff cause they will sometimes not coordinate these things and it's ridiculous that they come in spaced a half hour apart, just as she's taking a nap/resting. Some things like a weight check at 6AM can be put off until a more reasonable time.

If she's at a children's hospital, they will have so much for her to do, it is like a mini vacation. My youngest was so into riding her bike that we brought in her bike and my husband's trainer to put it on and she would just peddle away while playing video games (something we didn't have at home). Not all hospitals are updated with DVD players but most all have VCR's. We have movies that we reserved only for hospital use. Most child life rooms have movies to borrow as well. I'd only bring one favorite stuffy, as she will most likely get a couple while she is in.

Lastly, you will take home more than you brought in!<img src=""> Crafts, gifts from visitors, as well as gifts from child life and hospital volunteers.

Liza · Oct 22, 2008

Hi Kathleen, Everyone covered it all so well I don't think I have much to add. I never brought our own sheets because the hospital beds require extra long sheets. Twins are a struggle to get on. And if they change the bed when you are not there in the room your sheets may just disappear. However, we always brought in our own blanket/comforter and pillow. If she's going to be in for a full course (usually about 10-14 days) be sure to let her teacher know and ask if they can have the class make some get well cards. You can pick them up and hang them in her room. Most rooms have a bulletin board but that won't be big enough. Look and see if there are thumb tac holes in the walls, if so grab some thumb tacs and some string (yarn will stretch too much) and create a hanging line to hang the cards by clothes pins. I forgot to tell you to get those too. If there are no holes you can use tape. If her room has a window, ask child life if she can paint it. We have been to several hospitals an no one has ever said "no".
 
 As for a PT/neb schedule. They WILL try and do it all hours of the night sometimes. Ask the doc at check in or the next day, how crucial it is that it be evenly distributed. Figure our what four times a day would be good. We always told them no treatments before 8AM but (and my girls were older) they had up until 10pm and 11pm when they were even older. Ask RT what their schedule is for her, then if they give you bad times, tell them what you want.
 
 Also, monitor when they come in for vitals and stuff cause they will sometimes not coordinate these things and it's ridiculous that they come in spaced a half hour apart, just as she's taking a nap/resting. Some things like a weight check at 6AM can be put off until a more reasonable time.
 
 If she's at a children's hospital, they will have so much for her to do, it is like a mini vacation. My youngest was so into riding her bike that we brought in her bike and my husband's trainer to put it on and she would just peddle away while playing video games (something we didn't have at home). Not all hospitals are updated with DVD players but most all have VCR's. We have movies that we reserved only for hospital use. Most child life rooms have movies to borrow as well. I'd only bring one favorite stuffy, as she will most likely get a couple while she is in.
 
 Lastly, you will take home more than you brought in!<img src=""> Crafts, gifts from visitors, as well as gifts from child life and hospital volunteers.

JazzysMom · Oct 22, 2008

I ?? the comforter & sheets only because of changing them &/or getting blood, meds or other things that might be difficult to get out on them. Pillows I agree with taking tho.

Even tho they have notice you are coming, until she is officially in the computer all the departments cant do their thing which includes the pharmacy.

CPT is very important since the meds can only do sooo much work, the CPT helps with the rest of it. Years ago we got 4 treatments a day. That is when the therapists were allowed to work 8am to 10pm. Now the hours are limited so we only get 3 treatments, but every hospital is different.

JazzysMom · Oct 22, 2008

I ?? the comforter & sheets only because of changing them &/or getting blood, meds or other things that might be difficult to get out on them. Pillows I agree with taking tho.

Even tho they have notice you are coming, until she is officially in the computer all the departments cant do their thing which includes the pharmacy.

CPT is very important since the meds can only do sooo much work, the CPT helps with the rest of it. Years ago we got 4 treatments a day. That is when the therapists were allowed to work 8am to 10pm. Now the hours are limited so we only get 3 treatments, but every hospital is different.

JazzysMom · Oct 22, 2008

I ?? the comforter & sheets only because of changing them &/or getting blood, meds or other things that might be difficult to get out on them. Pillows I agree with taking tho.

Even tho they have notice you are coming, until she is officially in the computer all the departments cant do their thing which includes the pharmacy.

CPT is very important since the meds can only do sooo much work, the CPT helps with the rest of it. Years ago we got 4 treatments a day. That is when the therapists were allowed to work 8am to 10pm. Now the hours are limited so we only get 3 treatments, but every hospital is different.

JazzysMom · Oct 22, 2008

I ?? the comforter & sheets only because of changing them &/or getting blood, meds or other things that might be difficult to get out on them. Pillows I agree with taking tho.

Even tho they have notice you are coming, until she is officially in the computer all the departments cant do their thing which includes the pharmacy.

CPT is very important since the meds can only do sooo much work, the CPT helps with the rest of it. Years ago we got 4 treatments a day. That is when the therapists were allowed to work 8am to 10pm. Now the hours are limited so we only get 3 treatments, but every hospital is different.

JazzysMom · Oct 22, 2008

I ?? the comforter & sheets only because of changing them &/or getting blood, meds or other things that might be difficult to get out on them. Pillows I agree with taking tho.
 
 Even tho they have notice you are coming, until she is officially in the computer all the departments cant do their thing which includes the pharmacy.
 
 CPT is very important since the meds can only do sooo much work, the CPT helps with the rest of it. Years ago we got 4 treatments a day. That is when the therapists were allowed to work 8am to 10pm. Now the hours are limited so we only get 3 treatments, but every hospital is different.

ginandbrea · Oct 23, 2008

Yes, every hospital is different... We were fortunate that RT was done between 8 a.m. - 9 p.m. and we were able to fit in 4 treatments a day.

As far as the sheets, pillows, comforter, I took them home every other day and washed (it made such a difference in my daughter), no meds/blood was spilled on them, the staff was aware not to change or take anything... we were very well taken care of. I feel very fortunate to have Children's Hospital ! Hope the same for you !

Take care, <img src="i/expressions/heart.gif" border="0">
Gina

ginandbrea · Oct 23, 2008

Yes, every hospital is different... We were fortunate that RT was done between 8 a.m. - 9 p.m. and we were able to fit in 4 treatments a day.

As far as the sheets, pillows, comforter, I took them home every other day and washed (it made such a difference in my daughter), no meds/blood was spilled on them, the staff was aware not to change or take anything... we were very well taken care of. I feel very fortunate to have Children's Hospital ! Hope the same for you !

Take care, <img src="i/expressions/heart.gif" border="0">
Gina

ginandbrea · Oct 23, 2008

Yes, every hospital is different... We were fortunate that RT was done between 8 a.m. - 9 p.m. and we were able to fit in 4 treatments a day.

As far as the sheets, pillows, comforter, I took them home every other day and washed (it made such a difference in my daughter), no meds/blood was spilled on them, the staff was aware not to change or take anything... we were very well taken care of. I feel very fortunate to have Children's Hospital ! Hope the same for you !

Take care, <img src="i/expressions/heart.gif" border="0">
Gina

ginandbrea · Oct 23, 2008

Yes, every hospital is different... We were fortunate that RT was done between 8 a.m. - 9 p.m. and we were able to fit in 4 treatments a day.

As far as the sheets, pillows, comforter, I took them home every other day and washed (it made such a difference in my daughter), no meds/blood was spilled on them, the staff was aware not to change or take anything... we were very well taken care of. I feel very fortunate to have Children's Hospital ! Hope the same for you !

Take care, <img src="i/expressions/heart.gif" border="0">
Gina

ginandbrea · Oct 23, 2008

Yes, every hospital is different... We were fortunate that RT was done between 8 a.m. - 9 p.m. and we were able to fit in 4 treatments a day.
 
 As far as the sheets, pillows, comforter, I took them home every other day and washed (it made such a difference in my daughter), no meds/blood was spilled on them, the staff was aware not to change or take anything... we were very well taken care of. I feel very fortunate to have Children's Hospital ! Hope the same for you !
 
 Take care, <img src="i/expressions/heart.gif" border="0">
 Gina

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