Update on Baby Jackie

[BabyJackiesaunt]

I wanted to let you know Jackie came home from the hospital today. After the Dr. saw her choke on her formula he ordered a swallowing study, she was aspirating into her lungs. They thicken her formula with Simply Thick, a gel like substance. Anyway, the chest x-ray from today still shows pneumonia, we were told she would have to be released because of insurance purposes. They gave us oral antibiotics and sent her home. We are HOPING and PRAYING everything will be alright. Her parents THOUGHT they had good insurance. We are learning more everyday and alot of it comes from this forum. Has anyone been sent home or known of an infant that has been sent home with pneumonia (a spot on the lung)?
Thanks,
Carol

 

[BabyJackiesaunt]

I wanted to let you know Jackie came home from the hospital today. After the Dr. saw her choke on her formula he ordered a swallowing study, she was aspirating into her lungs. They thicken her formula with Simply Thick, a gel like substance. Anyway, the chest x-ray from today still shows pneumonia, we were told she would have to be released because of insurance purposes. They gave us oral antibiotics and sent her home. We are HOPING and PRAYING everything will be alright. Her parents THOUGHT they had good insurance. We are learning more everyday and alot of it comes from this forum. Has anyone been sent home or known of an infant that has been sent home with pneumonia (a spot on the lung)?
Thanks,
Carol

 

[anonymous]

This is the first time I have heard that a child is sent home from the hospital due to insurance. Is that the only reason that Jackie is being sent home? The first priority is for Jackie to get the medical care that she needs. If insurance was a problem (although I doubt that insurance can say no she can't get the care she needs), she could have IV antibiotics at home with a home health care nurse. Is Jackie seeing a cf doctor at a CF foundation approved cf clinic? You can check on <a target=new class=ftalternatingbarlinklarge href="http://www.cff.org/chapters_and_care_centers/">http://www.cff.org/chapters_and_care_centers/</a> How long was she on IV antibiotics? If it was for 8-14 days that is the average for pneumonia. Also, x-rays still might not be clear after IV antibiotics. It could take weeks or months for the x-rays to clear. I think both of my children were sent home as infants with x-rays that were not clear after two weeks of IV antibiotics. They were acting a lot better and seemed to be over the pneumonia, it just took a few weeks for the x-rays to get back to baseline (normal). I know it can be confusing being so new to cf and to be getting info second hand. Make sure your sister-in-law asks plenty of questions especially when they are confused. Her parents are essential to her medical care. It took me a little while to understand that I am the one who knows my kids best and the doctors and I work in a partnership in making medical decisions.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf

 

[anonymous]

This is the first time I have heard that a child is sent home from the hospital due to insurance. Is that the only reason that Jackie is being sent home? The first priority is for Jackie to get the medical care that she needs. If insurance was a problem (although I doubt that insurance can say no she can't get the care she needs), she could have IV antibiotics at home with a home health care nurse. Is Jackie seeing a cf doctor at a CF foundation approved cf clinic? You can check on <a target=new class=ftalternatingbarlinklarge href="http://www.cff.org/chapters_and_care_centers/">http://www.cff.org/chapters_and_care_centers/</a> How long was she on IV antibiotics? If it was for 8-14 days that is the average for pneumonia. Also, x-rays still might not be clear after IV antibiotics. It could take weeks or months for the x-rays to clear. I think both of my children were sent home as infants with x-rays that were not clear after two weeks of IV antibiotics. They were acting a lot better and seemed to be over the pneumonia, it just took a few weeks for the x-rays to get back to baseline (normal). I know it can be confusing being so new to cf and to be getting info second hand. Make sure your sister-in-law asks plenty of questions especially when they are confused. Her parents are essential to her medical care. It took me a little while to understand that I am the one who knows my kids best and the doctors and I work in a partnership in making medical decisions.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf

 

[julie]

Carol,

I have NEVER heard of an infant or young child being sent home from the hospital with pneumonia and the doctors were recommending AGAINST the discharge. I would recommend the family call the insurance company ASAP on monday to find out exactly what happended.

Additionally, I realize you may not want to divulge too much personal information regarding the family-understandable. But do both mom and dad work? Even if they do, depending on the state in which you live, it might behoove you/the family to look into insurance coverage for children who have disabilities. Many people don't want to look at CF that way. But the reality is that in some cases, it truly is a disability.
Some states oly have insurance coverage for those who meet income criteria-very frustrating. Yet there are other states who do seem to have a clue and offer medical insurance for infants and children based on the CHILD's disability and do consider the parents income, but it is NOT the deciding factor. Sometimes there is a "medically needy" category that has nothing to do with income. I would recommend looking into that. If anything, they become a secondary when the primary insurance company decides to do something like this.

Did you/the family have a chance to peek at the doctors discharge instructions and chart notes? If so, did it state in there that Jackie was being discharged because of insurance "regulations"/problems vice the fact that the doctors thought she was ready to go home? I don't mean to be negative, but doctors aren't always honest people-they to are human.

Take care and glad to have you as a member, what a wonderful aunt!!!

 

[julie]

Carol,

I have NEVER heard of an infant or young child being sent home from the hospital with pneumonia and the doctors were recommending AGAINST the discharge. I would recommend the family call the insurance company ASAP on monday to find out exactly what happended.

Additionally, I realize you may not want to divulge too much personal information regarding the family-understandable. But do both mom and dad work? Even if they do, depending on the state in which you live, it might behoove you/the family to look into insurance coverage for children who have disabilities. Many people don't want to look at CF that way. But the reality is that in some cases, it truly is a disability.
Some states oly have insurance coverage for those who meet income criteria-very frustrating. Yet there are other states who do seem to have a clue and offer medical insurance for infants and children based on the CHILD's disability and do consider the parents income, but it is NOT the deciding factor. Sometimes there is a "medically needy" category that has nothing to do with income. I would recommend looking into that. If anything, they become a secondary when the primary insurance company decides to do something like this.

Did you/the family have a chance to peek at the doctors discharge instructions and chart notes? If so, did it state in there that Jackie was being discharged because of insurance "regulations"/problems vice the fact that the doctors thought she was ready to go home? I don't mean to be negative, but doctors aren't always honest people-they to are human.

Take care and glad to have you as a member, what a wonderful aunt!!!

 

[JennifersHope]

It is one hundred percernt against the law for a child or any person to be denied medical care at a public hospital in the United States. Sometimes, the patients are pushed out the door to soon, that happends all the time... seems like that happeneds to everyone but me.. I always have to beg.. Anyway patients have the right to treatment..period.. If I was thinking clearly I could tell you the name of the law exactly.. I will look it up tomorrow. but it is probably that they have a policy that had a DRG which only pays per illness...

Anyway, a doctor could never write in his notes that the patient needs to stay, and that the patient is being discharged unless it the patient refusing to stay which is a whole other story.

It is in a lot of cases safe for a baby to be home with pneumonia as long as they are drinking well, have good fever control and are over 3 months. That is usually the rule of thumb we use.. ALso they look at how high the white blood count is, O2 sats and stuff like that. BUt if all of those things are okay, we usually send the baby home as well. Also pneumonia from aspiration can take months to disappear on x ray.. so that may be the case.

Probably if I were to guess, they thought she could use to stay longer but didn't feel like it was worth the fight.. With insurance companies some of them use DGRs and things that dictate how much they will pay per illness. It is usually up to the hospital to treat that patient within that fee. Thier are several ways to get around the set number of days such as claiming a varience, which would be something like a fever, baby not eating, etc.

I would almost promise that the doctor didn't write in his chart patient needs to stay but being sent home anyway.. That is a major lawsuit on the hospitals part waiting to happen.... and they always always cover themselves fully. Ultimately the doctor has the final stay.


ALso as a side note, a patient ALWAYS HAS THE RIGHT to refuse to leave if they don't feel they are ready. They will be given a second op. from another doctor, and then if that doctor agrees the patient will be sent home.


ANyway, if you feel like Jackie is getting worse or her symptoms are returning.. bring her right back to the hospital. ALso, if you can't control her fever, or if she isn't having several wet diapers a day.

Good luck,

Jennifer

 

[JennifersHope]

It is one hundred percernt against the law for a child or any person to be denied medical care at a public hospital in the United States. Sometimes, the patients are pushed out the door to soon, that happends all the time... seems like that happeneds to everyone but me.. I always have to beg.. Anyway patients have the right to treatment..period.. If I was thinking clearly I could tell you the name of the law exactly.. I will look it up tomorrow. but it is probably that they have a policy that had a DRG which only pays per illness...

Anyway, a doctor could never write in his notes that the patient needs to stay, and that the patient is being discharged unless it the patient refusing to stay which is a whole other story.

It is in a lot of cases safe for a baby to be home with pneumonia as long as they are drinking well, have good fever control and are over 3 months. That is usually the rule of thumb we use.. ALso they look at how high the white blood count is, O2 sats and stuff like that. BUt if all of those things are okay, we usually send the baby home as well. Also pneumonia from aspiration can take months to disappear on x ray.. so that may be the case.

Probably if I were to guess, they thought she could use to stay longer but didn't feel like it was worth the fight.. With insurance companies some of them use DGRs and things that dictate how much they will pay per illness. It is usually up to the hospital to treat that patient within that fee. Thier are several ways to get around the set number of days such as claiming a varience, which would be something like a fever, baby not eating, etc.

I would almost promise that the doctor didn't write in his chart patient needs to stay but being sent home anyway.. That is a major lawsuit on the hospitals part waiting to happen.... and they always always cover themselves fully. Ultimately the doctor has the final stay.


ALso as a side note, a patient ALWAYS HAS THE RIGHT to refuse to leave if they don't feel they are ready. They will be given a second op. from another doctor, and then if that doctor agrees the patient will be sent home.


ANyway, if you feel like Jackie is getting worse or her symptoms are returning.. bring her right back to the hospital. ALso, if you can't control her fever, or if she isn't having several wet diapers a day.

Good luck,

Jennifer