Quality of Hospital Care
- Thread starter Dad89
- Start date
My daughter's 1st clean-out was at children's Boston, 1 year ago. We felt pretty unhappy with the way they treated us there. However, my daughter did well after being discharged from the hospital, which I am grateful for and I credit her pulomonary doc at Children's for however, he has since left Children's for a different position elsewhere(different state and we no longer see him) He was an excellent doc.
We were so unhappy we decided to transfer to a different doc at Mass General and no longer go to Children's CF clinic. We have gone to mass Gen twice for check-up for my daughter nothing complicated yet so Thankfully she has not had a clean-out at Mass-Gen. We use MGH as a second opinion because it is very far from us and our regular Cf care we do on a regular basis closer to home. MGH CF center is very focused on infection control, not spreading bugs from CF'er to CFer but like I said we have not had my daughter admitted for clean-out, yet.
HTH
We were so unhappy we decided to transfer to a different doc at Mass General and no longer go to Children's CF clinic. We have gone to mass Gen twice for check-up for my daughter nothing complicated yet so Thankfully she has not had a clean-out at Mass-Gen. We use MGH as a second opinion because it is very far from us and our regular Cf care we do on a regular basis closer to home. MGH CF center is very focused on infection control, not spreading bugs from CF'er to CFer but like I said we have not had my daughter admitted for clean-out, yet.
HTH
Jane,
Sorry to be so vague. It seemd like our experience was one fiasco after another(it was our first clean-out ever so maybe that was part of it) We definately felt like a number not a patient. They kept my daughter nothing by mouth for 12 hours, she was 2 1/2 at the time for a bronch, she kept getting bumped for emergencys. By the time the bronch was done, my daughter needed IV fluids to keep from getting dehydrated, they did not have enough IV nurses to put my daughter's PICC line in during the bronch (which would have been under sedation) so they had to do it while she was awake, again she's 2 1/2 at the time. The IV nurse tried 5 times to get the PICC in, couldn't do it, another IV nurse tried for an hour after I left after I specifically gave instruciton she only had one more try(I had to go home to take care of another child) It ended up my daughter need to go under sedation for the PICC for it to be done by a doctor(who did a fantastic job!) I just felt it was very disorganized, the nurses were understaffed, and infection control wasn't great with resp treatments. I realize my daughter was a difficult patient to get the PICC line in, but they kept giving us the runaround. I did speak with the nursing supervisor about all this plus administration because I was furious. They kept keeping my daughter nothing bu mouth for stand-by in case they could "squeeze" her in to do the PICC in IR. And 2 days in a row they come back and say sorry. It was awful for her and me.
However, my daughter did have good care at Boston children's in the past, she had emergency surgery there for abdominal problems and there was nothing they did wrong. But we didn't really deal with CF people for this, mostly surgery so I don't know.
I am posting anonymously because, who knows if we'll ever need to go back there but I just have a bad feeling from theat hospitalazation. I'm sure they think I'm a b*tch as well
Sorry to be so vague. It seemd like our experience was one fiasco after another(it was our first clean-out ever so maybe that was part of it) We definately felt like a number not a patient. They kept my daughter nothing by mouth for 12 hours, she was 2 1/2 at the time for a bronch, she kept getting bumped for emergencys. By the time the bronch was done, my daughter needed IV fluids to keep from getting dehydrated, they did not have enough IV nurses to put my daughter's PICC line in during the bronch (which would have been under sedation) so they had to do it while she was awake, again she's 2 1/2 at the time. The IV nurse tried 5 times to get the PICC in, couldn't do it, another IV nurse tried for an hour after I left after I specifically gave instruciton she only had one more try(I had to go home to take care of another child) It ended up my daughter need to go under sedation for the PICC for it to be done by a doctor(who did a fantastic job!) I just felt it was very disorganized, the nurses were understaffed, and infection control wasn't great with resp treatments. I realize my daughter was a difficult patient to get the PICC line in, but they kept giving us the runaround. I did speak with the nursing supervisor about all this plus administration because I was furious. They kept keeping my daughter nothing bu mouth for stand-by in case they could "squeeze" her in to do the PICC in IR. And 2 days in a row they come back and say sorry. It was awful for her and me.
However, my daughter did have good care at Boston children's in the past, she had emergency surgery there for abdominal problems and there was nothing they did wrong. But we didn't really deal with CF people for this, mostly surgery so I don't know.
I am posting anonymously because, who knows if we'll ever need to go back there but I just have a bad feeling from theat hospitalazation. I'm sure they think I'm a b*tch as well
Katy, can I ask if Mike goes to the cf clinic through Hasbro? (In the Coro center down the street) Just curious because my son did until we moved. I loved all the staff there, especialy the doctor. Ok well not the social worker! I was upset about leaving them and miss those people because I felt they really knew my son well and his condition. He was hospitalized at Hasbro too.
oo! oo! this is the perfect topic for me!!! haha, i went to boston childrens all my life up until about 2 years ago. at childrens i saw dr. waltz, and now i see dr. dorkin. love them both! although i seem to like dorkin more, but most likely because i can understand what hes saying because im older now.
anyways, im currently having my first clean out with MGH and in comparison to childrens, i liked childrens more. b/c they baby-ed me there, and at MGH im just being treated my age more (soo.... its really not their fault)
i grew up at childrens so the changes are hard to get used to (the stupid details like when they do dressing changes for IV's and such) so thats annoying. but i would say its a very good hospital to transition to in comparison to what i've heard about other peoples transitions. they're very similar hospitals.
if you have any specific questions, i'd be more then extatic to answer them, so PM me or just write on here! its hard to know what you wanted, so i hope this helped!
overall, for a hospital, MGH is more teenager friendly b/c its an older atmosphere, but if your teen wants to be with a younger crowd then childrens is your place.
anyways, im currently having my first clean out with MGH and in comparison to childrens, i liked childrens more. b/c they baby-ed me there, and at MGH im just being treated my age more (soo.... its really not their fault)
i grew up at childrens so the changes are hard to get used to (the stupid details like when they do dressing changes for IV's and such) so thats annoying. but i would say its a very good hospital to transition to in comparison to what i've heard about other peoples transitions. they're very similar hospitals.
if you have any specific questions, i'd be more then extatic to answer them, so PM me or just write on here! its hard to know what you wanted, so i hope this helped!
overall, for a hospital, MGH is more teenager friendly b/c its an older atmosphere, but if your teen wants to be with a younger crowd then childrens is your place.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rokiss12</b></i>
i liked childrens more. b/c they baby-ed me there, and at MGH im just being treated my age more (soo.... its really not their fault)
.</end quote></div>
Hey Rosskiss,
I'm an MGHer also, I see doctor Lapey. Can I ask what floor your on? it makes a diffrence on how your treated/babyed. I dont know what your looking for, but if its for them to keep you more preoccupied while your visiting, ask for the play nurses to visit (I dont know what they real names or titles are). They run thet play room, and if someones on another floor or can't come to the play room, they will come to you. They are really nice, and will bring yuo stuff that you can do for fun (movies/video games/ boardgames etc). one time I had a whole sets of sheets tye died <img src="i/expressions/face-icon-small-tongue.gif" border="0">
I hope this helps. best of luck with the rest of your visit.
JANE,
I have never been to Childrens, But I love the care I get at MGH, and would never go anywhere else
-Bill
i liked childrens more. b/c they baby-ed me there, and at MGH im just being treated my age more (soo.... its really not their fault)
.</end quote></div>
Hey Rosskiss,
I'm an MGHer also, I see doctor Lapey. Can I ask what floor your on? it makes a diffrence on how your treated/babyed. I dont know what your looking for, but if its for them to keep you more preoccupied while your visiting, ask for the play nurses to visit (I dont know what they real names or titles are). They run thet play room, and if someones on another floor or can't come to the play room, they will come to you. They are really nice, and will bring yuo stuff that you can do for fun (movies/video games/ boardgames etc). one time I had a whole sets of sheets tye died <img src="i/expressions/face-icon-small-tongue.gif" border="0">
I hope this helps. best of luck with the rest of your visit.
JANE,
I have never been to Childrens, But I love the care I get at MGH, and would never go anywhere else
-Bill
I have very limited input on this, but here goes. I was dx at Bostons Childrens Hospital. We learned about CPT, Nebs etc there. Granted this was 30 years ago, but I remember hating everyone & everything except Dr. Schwackman (sp?) who was the doctor at the time. I remember them not having patience with me when I couldnt get the hang of hacking up the sputum. Its a very vivid memory for me! I just had to share that tho it doesnt do you a darn bit of good in todays time!
thanks bill! me and the play room ladies were best friends at childrens <img src="i/expressions/face-icon-small-smile.gif" border="0"> i have a ceiling tile painted STILL on one of the floors there <img src="i/expressions/face-icon-small-smile.gif" border="0">
i was on 17 at MGH, which is the toddlers floor b/c my age floor couldnt take me b/c they already had someone with CF there. i think the main thing is, is that i now know what the doctors are saying, and ive just been given alot more responsibility. it was bound to happen some time, so im just learning to grow up fast (as all CFers need to usually) so im dealing, haha. but i do like the playroom ladies at MGH too, they lent me a computer with internet while i was there!
thanks bill!
-kate
i was on 17 at MGH, which is the toddlers floor b/c my age floor couldnt take me b/c they already had someone with CF there. i think the main thing is, is that i now know what the doctors are saying, and ive just been given alot more responsibility. it was bound to happen some time, so im just learning to grow up fast (as all CFers need to usually) so im dealing, haha. but i do like the playroom ladies at MGH too, they lent me a computer with internet while i was there!
thanks bill!
-kate
Are you home now Kate? How's it going with the insulin- what's the update?
We look at those painted panels all the time when we're at Children's. They are all over the place. Tell me which one you did and we'll see if we can find it<img src="i/expressions/face-icon-small-smile.gif" border="0">.
We look at those painted panels all the time when we're at Children's. They are all over the place. Tell me which one you did and we'll see if we can find it<img src="i/expressions/face-icon-small-smile.gif" border="0">.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amber682</b></i>
Katy, can I ask if Mike goes to the cf clinic through Hasbro? (In the Coro center down the street) Just curious because my son did until we moved. I loved all the staff there, especialy the doctor. Ok well not the social worker! I was upset about leaving them and miss those people because I felt they really knew my son well and his condition. He was hospitalized at Hasbro too.</end quote></div>
yeah everyone there is like his family since he's been going there for 28 years. All of the care is very personal.
Katy, can I ask if Mike goes to the cf clinic through Hasbro? (In the Coro center down the street) Just curious because my son did until we moved. I loved all the staff there, especialy the doctor. Ok well not the social worker! I was upset about leaving them and miss those people because I felt they really knew my son well and his condition. He was hospitalized at Hasbro too.</end quote></div>
yeah everyone there is like his family since he's been going there for 28 years. All of the care is very personal.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jane</b></i>
Are you home now Kate? How's it going with the insulin- what's the update?
We look at those painted panels all the time when we're at Children's. They are all over the place. Tell me which one you did and we'll see if we can find it<img src="i/expressions/face-icon-small-smile.gif" border="0">.</end quote></div>
oo! haha it was one of the kids floors... probably 9 east or something... um, ill check with my mom if i think of it. but anyways, it was a clock that i painted on it, and i actually painted the exact time it was when i did it
hahaha
and i am home now- doing a home clean out, and the insulin honestly sucks, but im dealing with it! as usual! with any luck ill have my IV out tuesday, but the doctor is thinking thursday.
sooo ill keep everyone posted! thanks for thinking of me!
Are you home now Kate? How's it going with the insulin- what's the update?
We look at those painted panels all the time when we're at Children's. They are all over the place. Tell me which one you did and we'll see if we can find it<img src="i/expressions/face-icon-small-smile.gif" border="0">.</end quote></div>
oo! haha it was one of the kids floors... probably 9 east or something... um, ill check with my mom if i think of it. but anyways, it was a clock that i painted on it, and i actually painted the exact time it was when i did it
hahahaand i am home now- doing a home clean out, and the insulin honestly sucks, but im dealing with it! as usual! with any luck ill have my IV out tuesday, but the doctor is thinking thursday.
sooo ill keep everyone posted! thanks for thinking of me!
<div class="FTQUOTE"><begin quote>yeah everyone there is like his family since he's been going there for 28 years. All of the care is very personal. </end quote></div>
I was just wondering. With the exception of one resident, I loved the docs there and nurses especially. I even liked the food!
I was just wondering. With the exception of one resident, I loved the docs there and nurses especially. I even liked the food!