Confirmation of diagnosis

[auntcob]

After more tests at Hopkins (we went to seek a second opinion), Dr. Mogayzel confirmed a CF dx for Adam. At clinic on Wed., Adam's PFTs were down almost 10% from last appt in December. That, along with the confirmation, means he is doing airway clearance for the first time. He has started doing acepella, hypertonic saline neb, and albuterol. We were totally caught off guard when the doc started deciding whether or not Adam needed to go in for IV antibiotics. Put him on cipro instead; scheduled for a bronchoscopy in early March.
Based on those results, he may go in.

Finally, my question..........When admitted for IV antibiotics, is it usually at the hospital connected with the CF clinic or can kids do that closer to home (hopkins is 1.5 hours from home)?

thanks!

 

[auntcob]

After more tests at Hopkins (we went to seek a second opinion), Dr. Mogayzel confirmed a CF dx for Adam. At clinic on Wed., Adam's PFTs were down almost 10% from last appt in December. That, along with the confirmation, means he is doing airway clearance for the first time. He has started doing acepella, hypertonic saline neb, and albuterol. We were totally caught off guard when the doc started deciding whether or not Adam needed to go in for IV antibiotics. Put him on cipro instead; scheduled for a bronchoscopy in early March.
Based on those results, he may go in.

Finally, my question..........When admitted for IV antibiotics, is it usually at the hospital connected with the CF clinic or can kids do that closer to home (hopkins is 1.5 hours from home)?

thanks!

 

[auntcob]

After more tests at Hopkins (we went to seek a second opinion), Dr. Mogayzel confirmed a CF dx for Adam. At clinic on Wed., Adam's PFTs were down almost 10% from last appt in December. That, along with the confirmation, means he is doing airway clearance for the first time. He has started doing acepella, hypertonic saline neb, and albuterol. We were totally caught off guard when the doc started deciding whether or not Adam needed to go in for IV antibiotics. Put him on cipro instead; scheduled for a bronchoscopy in early March.
<br />Based on those results, he may go in.
<br />
<br />Finally, my question..........When admitted for IV antibiotics, is it usually at the hospital connected with the CF clinic or can kids do that closer to home (hopkins is 1.5 hours from home)?
<br />
<br />thanks!

 

[hmw]

I would think going to Hopkins would be the best choice, since he'd be followed closely (daily) by his cf team and get the treatment they deem necessary. They would also be able to gauge his improvement and use that to determine when he'd be ready to go home. As far as I know it's routine to be treated at the hospital affiliated with your center unless there are extenuating circumstances making that completely impossible.

I'm glad that you've been able to finally get the definitive dx he needs to move forward with the best care possible... I hope daily treatments help bring up his pft's and the bronchoscopy is helpful.

 

[hmw]

I would think going to Hopkins would be the best choice, since he'd be followed closely (daily) by his cf team and get the treatment they deem necessary. They would also be able to gauge his improvement and use that to determine when he'd be ready to go home. As far as I know it's routine to be treated at the hospital affiliated with your center unless there are extenuating circumstances making that completely impossible.

I'm glad that you've been able to finally get the definitive dx he needs to move forward with the best care possible... I hope daily treatments help bring up his pft's and the bronchoscopy is helpful.

 

[hmw]

I would think going to Hopkins would be the best choice, since he'd be followed closely (daily) by his cf team and get the treatment they deem necessary. They would also be able to gauge his improvement and use that to determine when he'd be ready to go home. As far as I know it's routine to be treated at the hospital affiliated with your center unless there are extenuating circumstances making that completely impossible.
<br />
<br />I'm glad that you've been able to finally get the definitive dx he needs to move forward with the best care possible... I hope daily treatments help bring up his pft's and the bronchoscopy is helpful.

 

[Mommafirst]

I am glad that you finally have a diagnosis and can FIANLLY move on to helping Adam!!

I don't know what is "usually" done for those so far from clinic, but I'd think it would be important to be in the same hospital so that you can have daily access to the CF team. In our city there are three main hospitals. The CF center is associated with Children's Hospital and so even adults with CF must be admitted into Children's when in for a CF thing, even though the other two hospitals are better to accommodate adult's needs.

 

[Mommafirst]

I am glad that you finally have a diagnosis and can FIANLLY move on to helping Adam!!

I don't know what is "usually" done for those so far from clinic, but I'd think it would be important to be in the same hospital so that you can have daily access to the CF team. In our city there are three main hospitals. The CF center is associated with Children's Hospital and so even adults with CF must be admitted into Children's when in for a CF thing, even though the other two hospitals are better to accommodate adult's needs.

 

[Mommafirst]

I am glad that you finally have a diagnosis and can FIANLLY move on to helping Adam!!
<br />
<br />I don't know what is "usually" done for those so far from clinic, but I'd think it would be important to be in the same hospital so that you can have daily access to the CF team. In our city there are three main hospitals. The CF center is associated with Children's Hospital and so even adults with CF must be admitted into Children's when in for a CF thing, even though the other two hospitals are better to accommodate adult's needs.

 

[CJPsMom]

Welcome to the family.

My son is a patient at the Hopkins clinic as well (I actually just got off the phone with them).

I highly recommend staying at Hopkins if you can. The only downside is that the pediatric floor is shared rooms. We were there for the ileostomy takedown last month & they have FOUR kids to a room. We had 2 2-month olds, a 4-month old and a 4 year old for most of the week. Needless to say, no one slept much!

There is also a Children's House at Hopkins, if you need a place to stay while Adam is in the hospital. I don't have the details about it, but you should definitely ask about it.

 

[CJPsMom]

Welcome to the family.

My son is a patient at the Hopkins clinic as well (I actually just got off the phone with them).

I highly recommend staying at Hopkins if you can. The only downside is that the pediatric floor is shared rooms. We were there for the ileostomy takedown last month & they have FOUR kids to a room. We had 2 2-month olds, a 4-month old and a 4 year old for most of the week. Needless to say, no one slept much!

There is also a Children's House at Hopkins, if you need a place to stay while Adam is in the hospital. I don't have the details about it, but you should definitely ask about it.

 

[CJPsMom]

Welcome to the family.
<br />
<br />My son is a patient at the Hopkins clinic as well (I actually just got off the phone with them).
<br />
<br />I highly recommend staying at Hopkins if you can. The only downside is that the pediatric floor is shared rooms. We were there for the ileostomy takedown last month & they have FOUR kids to a room. We had 2 2-month olds, a 4-month old and a 4 year old for most of the week. Needless to say, no one slept much!
<br />
<br />There is also a Children's House at Hopkins, if you need a place to stay while Adam is in the hospital. I don't have the details about it, but you should definitely ask about it.

 

[hmw]

FOUR kids to a room, including kids with CF?!? <img src="i/expressions/face-icon-small-shocked.gif" border="0"> Oh my goodness!!

 

[hmw]

FOUR kids to a room, including kids with CF?!? <img src="i/expressions/face-icon-small-shocked.gif" border="0"> Oh my goodness!!

 

[hmw]

FOUR kids to a room, including kids with CF?!? <img src="i/expressions/face-icon-small-shocked.gif" border="0"> Oh my goodness!!

 

[Printer]

Four kids to a room would really scare me. Too much opportunity to pick up infections. I would look for another CF Center with private rooms.

 

[Printer]

Four kids to a room would really scare me. Too much opportunity to pick up infections. I would look for another CF Center with private rooms.

 

[Printer]

Four kids to a room would really scare me. Too much opportunity to pick up infections. I would look for another CF Center with private rooms.

 

[Ratatosk]

Yikes, I would hope that the other patients didn't have CF. When DS was in the NICU he shared a room with 3 micro preemies, then got moved to ICC (Infant Critical Care) and shared a room with a preemie, spina bifida baby and another with cranio facial issues.

And when he had his bowel obstruction surgery, we were initially told by the intake person in the ER that he'd have to share a room, but the we were placed in a private room and told that all CF patients get their own room.

 

[Ratatosk]

Yikes, I would hope that the other patients didn't have CF. When DS was in the NICU he shared a room with 3 micro preemies, then got moved to ICC (Infant Critical Care) and shared a room with a preemie, spina bifida baby and another with cranio facial issues.

And when he had his bowel obstruction surgery, we were initially told by the intake person in the ER that he'd have to share a room, but the we were placed in a private room and told that all CF patients get their own room.