<span class="postbody">Background- My 9year old son has always had bad asthma, hes always brought up lots of mucas but no other health issues and has grown lovely and tall even stocky....He was 8 in December and got Pneumonia so they began the testing for CF he has the chest syptoms, 3 Boarderline sweat tests, Delta F508 and still screening for another gene if there even is another.We met with Dr yesterday to discuss this and we was in there 20mins or so and came out of there with that he will be admitted to hospital by Monday for Iv's and have a camera test done as well.Now bearing in mind this is new and a shock Dr discussed nothing else as to what any of this even means but did say to get my other children referred for a sweat test.So my questions are...What does a 2wk iv treatment mean? What will happen etc...What should I take for myself and my son? How will he find this? Do I take all his medications he is already on with me? What is a camera test? Thanks ever so much <img src="http://www.cftrust.org.uk/forum/images/smiles/icon_smile.gif" alt="Smile" border="0" />
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- Thread starter katie4byz
- Start date
<span class="postbody">Background- My 9year old son has always had bad asthma, hes always brought up lots of mucas but no other health issues and has grown lovely and tall even stocky....He was 8 in December and got Pneumonia so they began the testing for CF he has the chest syptoms, 3 Boarderline sweat tests, Delta F508 and still screening for another gene if there even is another.We met with Dr yesterday to discuss this and we was in there 20mins or so and came out of there with that he will be admitted to hospital by Monday for Iv's and have a camera test done as well.Now bearing in mind this is new and a shock Dr discussed nothing else as to what any of this even means but did say to get my other children referred for a sweat test.So my questions are...What does a 2wk iv treatment mean? What will happen etc...What should I take for myself and my son? How will he find this? Do I take all his medications he is already on with me? What is a camera test? Thanks ever so much <img src="http://www.cftrust.org.uk/forum/images/smiles/icon_smile.gif" alt="Smile" border="0" />
Hospital stays for us is you get admitted in and then you get an IV placed, and depending on what med that put him on you will get IV treatments ever so many hours. We usually get a chest x-ray either the first or second day. We also usually get a pic line placed if we are going home on IV meds. Usually the hospital has a game system of some kind, like a playstation 2 that plays movies and games. When Abby has to go in for the 2 weeks of antibiotics, we are usually only there for 4 or 5 days to get the doseage right and then we go home on IV meds. It is very easy these days, they give you pressurized bottles so no IV pole needed. I would ask your docs about that if you or your son doesn't like your stay at the hospital. I always just want to get home so we can be around our own things and have our own bed and food. I would take his favorite snacks, drinks, movies, and games. The days can last forever when you're just sitting there. The hospitals typically frown on people bringing their own meds, but with that being said, medication at the hospital is expensive and our insurance deductibles are high so I usually bring mine from home and have them label them.
I've never heard of a camera test....my first thought is maybe a bronch. If that is what it is then they put a camera down in his lungs to take a look and clean out mucus if there is any. Abby has only had one so don't know that much about it. Maybe someone else on here can help with that.
I hope you and your son can find some relief. Hopefully everything will go smoothly. Good Luck!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
I've never heard of a camera test....my first thought is maybe a bronch. If that is what it is then they put a camera down in his lungs to take a look and clean out mucus if there is any. Abby has only had one so don't know that much about it. Maybe someone else on here can help with that.
I hope you and your son can find some relief. Hopefully everything will go smoothly. Good Luck!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hospital stays for us is you get admitted in and then you get an IV placed, and depending on what med that put him on you will get IV treatments ever so many hours. We usually get a chest x-ray either the first or second day. We also usually get a pic line placed if we are going home on IV meds. Usually the hospital has a game system of some kind, like a playstation 2 that plays movies and games. When Abby has to go in for the 2 weeks of antibiotics, we are usually only there for 4 or 5 days to get the doseage right and then we go home on IV meds. It is very easy these days, they give you pressurized bottles so no IV pole needed. I would ask your docs about that if you or your son doesn't like your stay at the hospital. I always just want to get home so we can be around our own things and have our own bed and food. I would take his favorite snacks, drinks, movies, and games. The days can last forever when you're just sitting there. The hospitals typically frown on people bringing their own meds, but with that being said, medication at the hospital is expensive and our insurance deductibles are high so I usually bring mine from home and have them label them.
I've never heard of a camera test....my first thought is maybe a bronch. If that is what it is then they put a camera down in his lungs to take a look and clean out mucus if there is any. Abby has only had one so don't know that much about it. Maybe someone else on here can help with that.
I hope you and your son can find some relief. Hopefully everything will go smoothly. Good Luck!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
I've never heard of a camera test....my first thought is maybe a bronch. If that is what it is then they put a camera down in his lungs to take a look and clean out mucus if there is any. Abby has only had one so don't know that much about it. Maybe someone else on here can help with that.
I hope you and your son can find some relief. Hopefully everything will go smoothly. Good Luck!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
scrapper1264
New member
The last time DS was in the hospital they would not let us use our own meds. Sometimes the nurses would be really busy during meal times so I would give DS enzymes out of our stash. Some nurses were fine with that and some were not.
Our hospitals here have Child Life Specialists who try to keep the kids entertained with games, videos, etc. They are truly a lifesaver in keeping the kids entertained and informed of procedures that need to be done.
Best of luck with your stay!
Our hospitals here have Child Life Specialists who try to keep the kids entertained with games, videos, etc. They are truly a lifesaver in keeping the kids entertained and informed of procedures that need to be done.
Best of luck with your stay!
scrapper1264
New member
The last time DS was in the hospital they would not let us use our own meds. Sometimes the nurses would be really busy during meal times so I would give DS enzymes out of our stash. Some nurses were fine with that and some were not.
Our hospitals here have Child Life Specialists who try to keep the kids entertained with games, videos, etc. They are truly a lifesaver in keeping the kids entertained and informed of procedures that need to be done.
Best of luck with your stay!
Our hospitals here have Child Life Specialists who try to keep the kids entertained with games, videos, etc. They are truly a lifesaver in keeping the kids entertained and informed of procedures that need to be done.
Best of luck with your stay!
M
Mommafirst
Guest
I know its scary.....I'm guessing they feel its time to get that pneumonia under control and that is a good thing. The hospital can be a scary place when you don't know what to expect, especially staying for 2 weeks. The first day will include a lot of bloodwork and line placement, but once you get past the first day or so, they will help you develop a routine....IV several times a day, respiratory therapy or the vest up to 4x per day, they usually give us physical therapy once a day to get the kids physical....it winds up being some very long days.
Bring what you'll need to feel comfy....PJs, snack food, food for you, pillows, games/books/electronic devices.
Best of luck
Bring what you'll need to feel comfy....PJs, snack food, food for you, pillows, games/books/electronic devices.
Best of luck
M
Mommafirst
Guest
I know its scary.....I'm guessing they feel its time to get that pneumonia under control and that is a good thing. The hospital can be a scary place when you don't know what to expect, especially staying for 2 weeks. The first day will include a lot of bloodwork and line placement, but once you get past the first day or so, they will help you develop a routine....IV several times a day, respiratory therapy or the vest up to 4x per day, they usually give us physical therapy once a day to get the kids physical....it winds up being some very long days.
Bring what you'll need to feel comfy....PJs, snack food, food for you, pillows, games/books/electronic devices.
Best of luck
Bring what you'll need to feel comfy....PJs, snack food, food for you, pillows, games/books/electronic devices.
Best of luck
hi, thank you for the replies, we got a call a few hours ago and were here now with my lo with his cream on still not been told water to expect and feeling very anxious my son on the other hand has settled in well <img src="i/expressions/face-icon-small-smile.gif" border="0"> I have all these thoughts as to is this neccassary and does he have to be here am I doing the right thing but I guess the docs know best and my son will be fine but these worries are here as I don't know much and still not sunk in all this I look at it like it won't harm him having 2wk ivs but if he gets poorly and this could of help and I refused I would not forgive myself, are these feelings normal??
hi, thank you for the replies, we got a call a few hours ago and were here now with my lo with his cream on still not been told water to expect and feeling very anxious my son on the other hand has settled in well <img src="i/expressions/face-icon-small-smile.gif" border="0"> I have all these thoughts as to is this neccassary and does he have to be here am I doing the right thing but I guess the docs know best and my son will be fine but these worries are here as I don't know much and still not sunk in all this I look at it like it won't harm him having 2wk ivs but if he gets poorly and this could of help and I refused I would not forgive myself, are these feelings normal??
D
DrRoe
Guest
Remember you know your son best - if anything seems out of whack let the nurses and docs know. Don't wait for them to notice. Also, if the IVs need to be replaced ask for a PIC line. Its a bit more complicated putting it in, but doesn't have to be replaced (as often) so is less painful etc. It sounds like they are going to do a bronch - to do this they put him partially asleep and put a tube into his lungs with a camera on it. Shorty has had it done twice with not bad effects. I am sure everything will work out - good luck.
D
DrRoe
Guest
Remember you know your son best - if anything seems out of whack let the nurses and docs know. Don't wait for them to notice. Also, if the IVs need to be replaced ask for a PIC line. Its a bit more complicated putting it in, but doesn't have to be replaced (as often) so is less painful etc. It sounds like they are going to do a bronch - to do this they put him partially asleep and put a tube into his lungs with a camera on it. Shorty has had it done twice with not bad effects. I am sure everything will work out - good luck.
I forgot to add ....be sure and know his IV schedule...I have been in twice now where I had to correct them on what time the IV's were due. No one is perfect, I am not faulting anyone. I'm just glad I knew when she was suppose to get her meds so I could correct the problem. Good luck!!!
I forgot to add ....be sure and know his IV schedule...I have been in twice now where I had to correct them on what time the IV's were due. No one is perfect, I am not faulting anyone. I'm just glad I knew when she was suppose to get her meds so I could correct the problem. Good luck!!!
It sounds like your child is newly diagnosed with CF? Take the opportunity to learn as much as you can while in the hospital. Not sure if there is a CF team, nutritionist, social worker, respiratory therapist, pharmacist. It takes a village to care for a CF kid<img src="i/expressions/face-icon-small-smile.gif" border="0"> Write stuff down,ask for handouts, pamphlets. Also know that CF is very specialized.
It is likely you will feel overwhelmed, ask for help. Now that your son is getting treatment for CF it is likely his health will improve. Are they teaching you how to do CHest PT?
It is likely you will feel overwhelmed, ask for help. Now that your son is getting treatment for CF it is likely his health will improve. Are they teaching you how to do CHest PT?
It sounds like your child is newly diagnosed with CF? Take the opportunity to learn as much as you can while in the hospital. Not sure if there is a CF team, nutritionist, social worker, respiratory therapist, pharmacist. It takes a village to care for a CF kid<img src="i/expressions/face-icon-small-smile.gif" border="0"> Write stuff down,ask for handouts, pamphlets. Also know that CF is very specialized.
It is likely you will feel overwhelmed, ask for help. Now that your son is getting treatment for CF it is likely his health will improve. Are they teaching you how to do CHest PT?
It is likely you will feel overwhelmed, ask for help. Now that your son is getting treatment for CF it is likely his health will improve. Are they teaching you how to do CHest PT?
thank you I will mention all the advice given, I am hoping to see someone soon and going to ask for as much info as possible.
yes he has only just been dianosed But the thing is is that Dr wants him on treatment yet has said he don't want to record an offical dianosis as its a big label to carry and he wants to stay away from that for as long as possible so am confused if that makes sense?
what is a chest pt? all I have uptown now is I haf to bring him in for this so don't know what future plans are again I find this strange that I am not being told much but while were here am going to get all the info we need, I don't know what to tell my son he's 9 so asking??
yes he has only just been dianosed But the thing is is that Dr wants him on treatment yet has said he don't want to record an offical dianosis as its a big label to carry and he wants to stay away from that for as long as possible so am confused if that makes sense?
what is a chest pt? all I have uptown now is I haf to bring him in for this so don't know what future plans are again I find this strange that I am not being told much but while were here am going to get all the info we need, I don't know what to tell my son he's 9 so asking??
thank you I will mention all the advice given, I am hoping to see someone soon and going to ask for as much info as possible.
yes he has only just been dianosed But the thing is is that Dr wants him on treatment yet has said he don't want to record an offical dianosis as its a big label to carry and he wants to stay away from that for as long as possible so am confused if that makes sense?
what is a chest pt? all I have uptown now is I haf to bring him in for this so don't know what future plans are again I find this strange that I am not being told much but while were here am going to get all the info we need, I don't know what to tell my son he's 9 so asking??
yes he has only just been dianosed But the thing is is that Dr wants him on treatment yet has said he don't want to record an offical dianosis as its a big label to carry and he wants to stay away from that for as long as possible so am confused if that makes sense?
what is a chest pt? all I have uptown now is I haf to bring him in for this so don't know what future plans are again I find this strange that I am not being told much but while were here am going to get all the info we need, I don't know what to tell my son he's 9 so asking??
Is your child's doctor a CF doctor? Are you at a hospital with a CF center? The Cystic Fibrosis Foundation has a list of accredited centers on their website at www.cff.org. There are ALOT of CF mutations; I think over 1800 and usually they first screen for the most common and then go further with the rare mutations; likely because of cost. You will find out more about what is going on with your child during your hospital stay. I would think a CF diagnosis would make access to certain CF drugs much easier to get. It sounds like they are trying to get to the bottom of things.
Chest PT is something that helps loosen mucus in the lungs so that it can be coughed up and out. People with CF have this done typically at least 2 times a day(depends on your doc/child etc). My daughter has a VEST machine she wears 3x a day everyday to help her loosen the mucus in her lungs.
I would ask your child's CF doc all your questions, write down your questions in a notebook, even write down the doc's answers in your notebook.
The Cystic Fibrosis Foundation is a reliable resource that has accurate information about the disease. Looking online some info can be outdated. their website is www.cff.org
Hang in there!
Chest PT is something that helps loosen mucus in the lungs so that it can be coughed up and out. People with CF have this done typically at least 2 times a day(depends on your doc/child etc). My daughter has a VEST machine she wears 3x a day everyday to help her loosen the mucus in her lungs.
I would ask your child's CF doc all your questions, write down your questions in a notebook, even write down the doc's answers in your notebook.
The Cystic Fibrosis Foundation is a reliable resource that has accurate information about the disease. Looking online some info can be outdated. their website is www.cff.org
Hang in there!
Is your child's doctor a CF doctor? Are you at a hospital with a CF center? The Cystic Fibrosis Foundation has a list of accredited centers on their website at www.cff.org. There are ALOT of CF mutations; I think over 1800 and usually they first screen for the most common and then go further with the rare mutations; likely because of cost. You will find out more about what is going on with your child during your hospital stay. I would think a CF diagnosis would make access to certain CF drugs much easier to get. It sounds like they are trying to get to the bottom of things.
Chest PT is something that helps loosen mucus in the lungs so that it can be coughed up and out. People with CF have this done typically at least 2 times a day(depends on your doc/child etc). My daughter has a VEST machine she wears 3x a day everyday to help her loosen the mucus in her lungs.
I would ask your child's CF doc all your questions, write down your questions in a notebook, even write down the doc's answers in your notebook.
The Cystic Fibrosis Foundation is a reliable resource that has accurate information about the disease. Looking online some info can be outdated. their website is www.cff.org
Hang in there!
Chest PT is something that helps loosen mucus in the lungs so that it can be coughed up and out. People with CF have this done typically at least 2 times a day(depends on your doc/child etc). My daughter has a VEST machine she wears 3x a day everyday to help her loosen the mucus in her lungs.
I would ask your child's CF doc all your questions, write down your questions in a notebook, even write down the doc's answers in your notebook.
The Cystic Fibrosis Foundation is a reliable resource that has accurate information about the disease. Looking online some info can be outdated. their website is www.cff.org
Hang in there!