Leaving a child alone in the hospital

P

peter

New member
I always consider the risk or exacerbation of infections. Only one dirty coat, tie, or dress hem can do it. I recommend Atul Gawande's 2008 book "Better". It' all about infections in hospitals and still relevant today.

As to your post, Jennifer. How much other ancillary care needs rendering in the hospital for IV therapy that would contraindicate her being at home instead?

As an aside too, this site's owner has now launched CFTechnology, a 501 (c) (3) to address the "mush brain" syndrome environment. If you click the donate button you can read about it. Donation is optional but your family members may like it's mission and contribute to it's becoming a force for good and well being.

Good luck!
 
P

peter

New member
I always consider the risk or exacerbation of infections. Only one dirty coat, tie, or dress hem can do it. I recommend Atul Gawande's 2008 book "Better". It' all about infections in hospitals and still relevant today.
<br />
<br />As to your post, Jennifer. How much other ancillary care needs rendering in the hospital for IV therapy that would contraindicate her being at home instead?
<br />
<br /> As an aside too, this site's owner has now launched CFTechnology, a 501 (c) (3) to address the "mush brain" syndrome environment. If you click the donate button you can read about it. Donation is optional but your family members may like it's mission and contribute to it's becoming a force for good and well being.
<br />
<br />Good luck!
 
J

jendonl

New member
They want her on two weeks of IVs.  Hopefully, though, she will be home after 2 or 3 days.  Once they determine she is tolerating the meds and that the infection is responding to it, we will be pretty insistant on bringing her home.  She was in the hospital last year over her 7th birthday and we're not going to let that happen again if we can help it.  I work, my husband is a stay-at-home Dad and we have two other kids - one is only 4 so not in school yet.  I had hoped to get some work in but Dad really hates hospitals so I guess I'll just take the time off and stay with her myself.  I can get some work done at the hospital (thank goodness for laptops and wireless internet) so maybe it won't be too bad.My dd is terrified of needles and hates any medical interventions - not a good thing for someone with CF.   It's not going to be fun for her. 
 
J

jendonl

New member
They want her on two weeks of IVs. Hopefully, though, she will be home after 2 or 3 days. Once they determine she is tolerating the meds and that the infection is responding to it, we will be pretty insistant on bringing her home. She was in the hospital last year over her 7th birthday and we're not going to let that happen again if we can help it. I work, my husband is a stay-at-home Dad and we have two other kids - one is only 4 so not in school yet. I had hoped to get some work in but Dad really hates hospitals so I guess I'll just take the time off and stay with her myself. I can get some work done at the hospital (thank goodness for laptops andwireless internet)so maybeit won't be too bad.My dd isterrified of needles and hates any medical interventions - not a good thing for someone with CF. It's not going to be fun for her.
 
J

jendonl

New member
<p>They want her on two weeks of IVs. Hopefully, though, she will be home after 2 or 3 days. Once they determine she is tolerating the meds and that the infection is responding to it, we will be pretty insistant on bringing her home. She was in the hospital last year over her 7th birthday and we're not going to let that happen again if we can help it. <p>I work, my husband is a stay-at-home Dad and we have two other kids - one is only 4 so not in school yet. I had hoped to get some work in but Dad really hates hospitals so I guess I'll just take the time off and stay with her myself. I can get some work done at the hospital (thank goodness for laptops andwireless internet)so maybeit won't be too bad.<p>My dd isterrified of needles and hates any medical interventions - not a good thing for someone with CF. It's not going to be fun for her.
 
J

jendonl

New member
Oh... and I would not judge someone who couldn't be in the hospital 24 hours.  I know it must be really hard for parents who can't afford to take time off from work, or are a single parent with other kids.  We are very fortunate to have a stay-at-home Dad, an understanding employer, and a good enough income that we can take time to be with her.<br>
 
J

jendonl

New member
Oh... and I would not judge someone who couldn't be in the hospital 24 hours. I know it must be really hard for parents who can't afford to take time off from work, or are a single parent with other kids. We are very fortunate to have a stay-at-home Dad, an understanding employer, and a good enough income that we can take time to be with her.<br>
 
J

jendonl

New member
Oh... and I would not judge someone who couldn't be in the hospital 24 hours. I know it must be really hard for parents who can't afford to take time off from work, or are a single parent with other kids. We are very fortunate to have a stay-at-home Dad, an understanding employer, and a good enough income that we can take time to be with her.<br>
 
I

imported_Momto2

New member
I wouldnt if you can avoid it until the tween years. My parents used to have to leave me for days at a time once I turned 8 (we lived in Boston, my specialist was in NYC, they both had full-time jobs). But it didnt do good things for my emotional well-being AND a lot of hospital mistakes were made that caused me to suffer needlessly. But that was back in the 1970's, things have advanced somewhat in pediatric care.

I've always advocated for doing the treatment/meds at home if at all possible. It reduces the potential for additional infections and mistakes. It's usually less expensive and keeps the normality of everyday life. People sleep and eat better at home too. But you obviously DO need an adult there at all times if a child is home doing meds. Not everyone has that ability as Deidre pointed out. If you dont work, no insurance, that sucks.

Bottom line Jennifer- do the best with what you got. If you have to leave for a while, see if a friend or neighbor can stop by (as long as they understand infection precautions).
 
I

imported_Momto2

New member
I wouldnt if you can avoid it until the tween years. My parents used to have to leave me for days at a time once I turned 8 (we lived in Boston, my specialist was in NYC, they both had full-time jobs). But it didnt do good things for my emotional well-being AND a lot of hospital mistakes were made that caused me to suffer needlessly. But that was back in the 1970's, things have advanced somewhat in pediatric care.

I've always advocated for doing the treatment/meds at home if at all possible. It reduces the potential for additional infections and mistakes. It's usually less expensive and keeps the normality of everyday life. People sleep and eat better at home too. But you obviously DO need an adult there at all times if a child is home doing meds. Not everyone has that ability as Deidre pointed out. If you dont work, no insurance, that sucks.

Bottom line Jennifer- do the best with what you got. If you have to leave for a while, see if a friend or neighbor can stop by (as long as they understand infection precautions).
 
I

imported_Momto2

New member
I wouldnt if you can avoid it until the tween years. My parents used to have to leave me for days at a time once I turned 8 (we lived in Boston, my specialist was in NYC, they both had full-time jobs). But it didnt do good things for my emotional well-being AND a lot of hospital mistakes were made that caused me to suffer needlessly. But that was back in the 1970's, things have advanced somewhat in pediatric care.
<br />
<br /> I've always advocated for doing the treatment/meds at home if at all possible. It reduces the potential for additional infections and mistakes. It's usually less expensive and keeps the normality of everyday life. People sleep and eat better at home too. But you obviously DO need an adult there at all times if a child is home doing meds. Not everyone has that ability as Deidre pointed out. If you dont work, no insurance, that sucks.
<br />
<br />Bottom line Jennifer- do the best with what you got. If you have to leave for a while, see if a friend or neighbor can stop by (as long as they understand infection precautions).
 
J

jendonl

New member
Just thought I'd update.  We were admitted this morning.  It did not go well.  It took over two hours to get the PICC line in.  We would think she was sleeping and try to do something and she'd wake up and struggle...hard.  Lots of blood.  Had to move to the other arm.  When she finally did sleep and the nurse was finally able to get it in her, the doctor said she'd had enough to put him out (and he's a very big guy.)After her xray to see if the PICC was in correctly, one of the nurses came back and told me it was not right and they had to pull it out.  I thought she must be joking!  What a horrible joke.  But what she really meant was that it was in too far and they just had to back it out a bit.  Wow, was I relieved.  But the x-ray looked funny so they just did another x-ray and it turns out it was fine after all.I sure hope the rest of the stay is easier.
 
J

jendonl

New member
Just thought I'd update. We were admitted this morning. It did not go well. It took over two hours to get the PICC line in. We would think she was sleeping and try to do something and she'd wake up and struggle...hard. Lots of blood. Had to move to the other arm. When she finally did sleep and the nurse was finally able to get it in her, the doctor said she'd had enough to put him out (and he's a very big guy.)After her xray to see if the PICC was in correctly, one of the nurses came back and told me it was not right and they had to pull it out. I thought she must be joking! What a horrible joke. But what she really meant was that it was in too far and they just had to back it out a bit. Wow, was I relieved. But the x-ray looked funny so they just did another x-ray and it turns out it was fine after all.I sure hope the rest of the stay is easier.
 
J

jendonl

New member
<p>Just thought I'd update. We were admitted this morning. It did not go well. It took over two hours to get the PICC line in. We would think she was sleeping and try to do something and she'd wake up and struggle...hard. Lots of blood. Had to move to the other arm. When she finally did sleep and the nurse was finally able to get it in her, the doctor said she'd had enough to put him out (and he's a very big guy.)<p>After her xray to see if the PICC was in correctly, one of the nurses came back and told me it was not right and they had to pull it out. I thought she must be joking! What a horrible joke. But what she really meant was that it was in too far and they just had to back it out a bit. Wow, was I relieved. But the x-ray looked funny so they just did another x-ray and it turns out it was fine after all.<p>I sure hope the rest of the stay is easier.
 
J

jendonl

New member
Thanks so much.  Yes.  We're at a CF center.  I don't blame the nurses. They were great, and very patient, empathetic and understanding.  My dd is just extremely strong willed and hates, hates, hates needles.  I hope she grows out of it.  It's almost as hard on me as it is on her.<br>
 
J

jendonl

New member
Thanks so much. Yes. We're at a CF center. I don't blame the nurses. They were great, and very patient, empatheticand understanding.My dd is just extremely strong willed and hates, hates, hates needles.I hope she grows out of it. It's almost as hard on me as it is on her.<br>
 
J

jendonl

New member
Thanks so much. Yes. We're at a CF center. I don't blame the nurses. They were great, and very patient, empatheticand understanding.My dd is just extremely strong willed and hates, hates, hates needles.I hope she grows out of it. It's almost as hard on me as it is on her.<br>
 
You must log in or register to reply here.
Top