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Forum
-> Children's Health
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amother
DarkOrange
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 Tue, Jan 17 2023, 9:42 am
| amother Seafoam wrote: | | Had the issue with the travel oxygen as an adult with Covid. They kept me for hours waiting for travel oxygen and they also wanted me to get a transport. When my husband told them we’re leaving by x o’clock suddenly the oxygen materialized. We have a ton of Gemachim could’ve gotten oxygen elsewhere. |
All the travel oxygen was is a wheel for the tank
I already had that delivered to my house
I could’ve bought it to the hospital
Or hold the tank till the car !
The problem is that you can’t say your leaving with a child because then you get cps involved
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amother
Olive
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Tue, Jan 17 2023, 9:47 am
| amother DarkOrange wrote: | All the travel oxygen was is a wheel for the tank
I already had that delivered to my house
I could’ve bought it to the hospital
Or hold the tank till the car !
The problem is that you can’t say your leaving with a child because then you get cps involved |
The above is true in NYS for sure
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DREAMING
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Tue, Jan 17 2023, 4:37 pm
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How’s the baby op? And how are you?
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amother
OP
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Tue, Jan 17 2023, 6:54 pm
I was told that they would finish Antibiotics on Monday night at 11pm. On Monday morning they told me that his saturation isn't what it should be. It was the same numbers the previous two days and no mention until Monday. To me, not having mention of saturation being a problem before Monday looked too much like moving the goal post. In addition the machine hasn't been picking up the numbers properly because I am constantly with my baby. They were going to look at the numbers a whole Monday to see how he was doing and then I would be able to take him home if they were good.
I was in the hospital for 33 hours straight and most of it I was holding my baby. The most frustrating part was watching the machine loose signal so often the entire 30 hour period and finding the nodes on my body. It's not doing it's job and it's very temperamental. They refused to listen to me about it.
Today they told me they will let him go if he's on oxygen and said it will take a few days to get equipment. BH I saw here to ask around and it's amazing to see the support of klal yisroel. The pulse ox fell through, couldn't actually pick it up when it was arranged. I'm still trying to get one. Regardless I told the hospital I would come at 8:30 with everything and I asked what else I need to do.
Tonight when I came, they told me they won't release him unless I have an appointment with pediatrician made for the morning. I asked the doctor about a pediatrician coming in person tonight and she wasn't open to that. I am extremely upset that they didn't communicate that with me as I kept asking them what else needs to happen and I wasn't answered.
I was also told that I need to bring all equipment here so that they can approve it and now the doctor is saying "I don't know the protocol for approving equipment from home".
I am going to try to get the pulse ox before I consider next step.
I am aware that this isn't "the standard of care" but I don't see benefit in torturing my baby any longer than necessary let alone putting my postpartum body through this.
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amother
Lemon
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Tue, Jan 17 2023, 6:58 pm
| amother OP wrote: | I was told that they would finish Antibiotics on Monday night at 11pm. On Monday morning they told me that his saturation isn't what it should be. It was the same numbers the previous two days and no mention until Monday. To me, not having mention of saturation being a problem before Monday looked too much like moving the goal post. In addition the machine hasn't been picking up the numbers properly because I am constantly with my baby. They were going to look at the numbers a whole Monday to see how he was doing and then I would be able to take him home if they were good.
I was in the hospital for 33 hours straight and most of it I was holding my baby. The most frustrating part was watching the machine loose signal so often the entire 30 hour period and finding the nodes on my body. It's not doing it's job and it's very temperamental. They refused to listen to me about it.
Today they told me they will let him go if he's on oxygen and said it will take a few days to get equipment. BH I saw here to ask around and it's amazing to see the support of klal yisroel. The pulse ox fell through, couldn't actually pick it up when it was arranged. I'm still trying to get one. Regardless I told the hospital I would come at 8:30 with everything and I asked what else I need to do.
Tonight when I came, they told me they won't release him unless I have an appointment with pediatrician made for the morning. I asked the doctor about a pediatrician coming in person tonight and she wasn't open to that. I am extremely upset that they didn't communicate that with me as I kept asking them what else needs to happen and I wasn't answered.
I was also told that I need to bring all equipment here so that they can approve it and now the doctor is saying "I don't know the protocol for approving equipment from home".
I am going to try to get the pulse ox before I consider next step.
I am aware that this isn't "the standard of care" but I don't see benefit in torturing my baby any longer than necessary let alone putting my postpartum body through this. |
Did you speak to the frum liaison at the hospital?
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amother
IndianRed
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Tue, Jan 17 2023, 6:59 pm
| amother Leaf wrote: | | It saddens me that you don't understand that a hypoglycemic baby can slip into a coma chv... They were absolutely correct to feed with formula and prick her tens of times as you say... Happy baby is ok |
Did you read that I was in constant contact with my very competent pediatrician who had seen her less than 24 hours earlier? He reassured me that she is perfectly healthy and ready to go home.
We're constantly told on this site that we need to trust our doctors. I trusted him after having a long talk with him and asking many questions. Does trust only apply when they try to scare you into hysteria that something is wrong with your child or was I also "allowed" to trust him when he reassured me that she needed no intervention?
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amother
Apricot
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Tue, Jan 17 2023, 7:00 pm
| amother Lemon wrote: | | Did you speak to the frum lesion at the hospital? |
I'm not sure if that's always helpful..
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amother
OP
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Tue, Jan 17 2023, 7:13 pm
| amother Lemon wrote: | | Did you speak to the frum liaison at the hospital? |
I don't think she has our best interest at heart.
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amother
Lemon
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Tue, Jan 17 2023, 7:14 pm
| amother OP wrote: | | I don't think she has our best interest at heart. |
There's a man. I forgot his name.
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amother
Denim
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Tue, Jan 17 2023, 7:27 pm
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OP, I'm so sorry for the situation you are in and everything you are going through. I hope tomorrow brings you a yeshua.
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amother
Whitesmoke
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Tue, Jan 17 2023, 7:34 pm
Mr miesels has pull in miamonidies.
He had gotten my neice out during Covid they did this….
I’m so sorry op sending you hugs .
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amother
Antiquewhite
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Tue, Jan 17 2023, 7:55 pm
It doesn’t really matter what the pediatrician says because the responsibility for a safe discharge falls on the NICU doctors, even if your pediatrician saw the baby in the hospital.
If anything happens, they are left holding the bag.
Wishing you and your baby a quick recovery together at home soon.
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amother
Papayawhip
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Tue, Jan 17 2023, 9:04 pm
I’m having PTSD reading this thread. I was in the exact same situation with my baby a few months ago in Maimonides nicu. Her pediatricians agreed she was fine to go home, hospital kept saying one more day. After 2 weeks I tried getting her transferred but they would not release her records or sign transfer orders. I threatened legal action and had some people call the main chaplains and that’s what finally worked. It was like they were holding this newborn hostage.
Edited to add: the frum nicu liaisons were zero help and very hard to get ahold of
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amother
Sunflower
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Tue, Jan 17 2023, 9:10 pm
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The liaisons work for the hospital. They would like to help you but their primary job is to communicate with you what the hospital wants....
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amother
Wandflower
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Wed, Jan 18 2023, 8:06 am
| amother IndianRed wrote: | Did you read that I was in constant contact with my very competent pediatrician who had seen her less than 24 hours earlier? He reassured me that she is perfectly healthy and ready to go home.
We're constantly told on this site that we need to trust our doctors. I trusted him after having a long talk with him and asking many questions. Does trust only apply when they try to scare you into hysteria that something is wrong with your child or was I also "allowed" to trust him when he reassured me that she needed no intervention? |
Yup this, it's always just trust your doctor, then the goal posts change.
I understand it is frustrating to work in a hospital and feel like parents are making a chilul hashem but I think it's time to let go of the ego and realize that parents really are the best advocates for their child and there are many horrible situations that can be avoided if we listened to our intuition. It's awful that people perpetuate this "Dr.'s have your best interest"
The do and they don't.
Hospitals operate as businesses whether we like it or not and that's a fact. For those who haven't been through the agony that this fact causes, have no say in this matter.
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amother
Lemon
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Wed, Jan 18 2023, 8:11 am
| amother Antiquewhite wrote: | It doesn’t really matter what the pediatrician says because the responsibility for a safe discharge falls on the NICU doctors, even if your pediatrician saw the baby in the hospital.
If anything happens, they are left holding the bag.
Wishing you and your baby a quick recovery together at home soon. |
Our pediatrician was affiliated with Maimonides yet the hospital stubbornly refused transfer. The child would've died in Maimonides had they not been transferred. Maimonides was not equipped to deal with the situation. The child suffered permanent damage because of the situation not being treated properly right away. All because Maimonides refused to release patient for transfer.
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amother
Lightcoral
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Wed, Jan 18 2023, 8:16 am
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The thing is that there is some kind of competition or lack of trust from hospitals to pediatricians. The ER (in maimonides actually) told me outright that the tests pediatricians do aren't worth anything, and their recommendations too.
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amother
DarkRed
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Wed, Jan 18 2023, 8:25 am
| amother Wandflower wrote: | Yup this, it's always just trust your doctor, then the goal posts change.
I understand it is frustrating to work in a hospital and feel like parents are making a chilul hashem but I think it's time to let go of the ego and realize that parents really are the best advocates for their child and there are many horrible situations that can be avoided if we listened to our intuition. It's awful that people perpetuate this "Dr.'s have your best interest"
The do and they don't.
Hospitals operate as businesses whether we like it or not and that's a fact. For those who haven't been through the agony that this fact causes, have no say in this matter. |
Why do you need to trust every doctor? Just because someone has a medical license doesn't mean they are trustworthy.
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amother
Apple
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Wed, Jan 18 2023, 8:34 am
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Oy OP this thread is bringing up so many awful memories for me and my heart is hurting for you. You are 100% right. They will make you run in circles and then move the goalposts so it was all for naught. My only nechama once we actually got out was a letter from my insurance company saying they are denying the last 3 days of the hospitalization as they were not medically necessary so the hospital is left without payment.
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