Home
Log in / Sign Up
    Private Messages   Advanced Search   Rules   New User Guide   FAQ   Advertise   Contact Us  
Forum -> Children's Health
Desperate! How to get baby discharged from NICU
  Previous  1  2  3  4  5  6  7  8  9  Next



Post new topic   Reply to topic View latest: 24h 48h 72h

amother
OP


 

Post Wed, Jan 18 2023, 11:15 am
Yep keep moving goal post. They said they won't use the equipment I ran around for. The supplies are "officially" going to come tomorrow.

Switched pediatricians as my other one wasn't being there for me. New one basically agreed with me that they are keeping him hostage and that I have a completely healthy baby. Of course I'm waiting for the hospital to talk to him directly and maybe his opinion will change, but I doubt it.

I hope with pediatrician and as many askanim as possible I will have him out before shabbos. But still hopeful for today.

I know the o2 sats are picking up bad wave form and it's being counted. They put him on oxygen, which is certainly keeping his numbers up, and it's still documenting the low numbers when there's bad wave form and when there's a loss of signal.
Back to top

amother
Mistyrose


 

Post Wed, Jan 18 2023, 11:32 am
Just a thought, call the higher up offices in your insurance company, show them your pediatrician feels safe for discharge.
Back to top

amother
Begonia


 

Post Wed, Jan 18 2023, 4:27 pm
amother Apple wrote:
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.


I would like to respond to this. Many of you may not be aware, ( I have a relative that works NICU in another hospital) there are plenty of cases the hospital knows they prob wont get paid for but would not release the infant unless they felt 100% it was safe. This is regardless of payment.
Back to top

amother
Begonia


 

Post Wed, Jan 18 2023, 4:33 pm
amother OP wrote:
Yep keep moving goal post. They said they won't use the equipment I ran around for. The supplies are "officially" going to come tomorrow.

Switched pediatricians as my other one wasn't being there for me. New one basically agreed with me that they are keeping him hostage and that I have a completely healthy baby. Of course I'm waiting for the hospital to talk to him directly and maybe his opinion will change, but I doubt it.

I hope with pediatrician and as many askanim as possible I will have him out before shabbos. But still hopeful for today.

I know the o2 sats are picking up bad wave form and it's being counted. They put him on oxygen, which is certainly keeping his numbers up, and it's still documenting the low numbers when there's bad wave form and when there's a loss of signal.


I know this is a hard and frustrating experience but I would have to say..one has to wonder the validity of what's going on here. your pediatrician didn't seem to agree.. so your switching. Was he a good pediatrician up until this point? Why would you not trust him? or are you saying that the hospital and the pediatrician either don't know what they are talking about or they are in this scheme together? I know you mentioned Chaim medical... were they able to help you? or did they also feel he should be monitored?
Back to top

amother
OP


 

Post Wed, Jan 18 2023, 4:40 pm
amother Begonia wrote:
I know this is a hard and frustrating experience but I would have to say..one has to wonder the validity of what's going on here. your pediatrician didn't seem to agree.. so your switching. Was he a good pediatrician up until this point? Why would you not trust him? or are you saying that the hospital and the pediatrician either don't know what they are talking about or they are in this scheme together? I know you mentioned Chaim medical... were they able to help you? or did they also feel he should be monitored?


My other pediatrician wouldn't give me his phone extension let alone a number I can call after hours. My new one is being available on WhatsApp! I will need Chaim medicals help getting him out tomorrow.

Today I literally watched the SATs go down to 70 as I rocked in the rocking chair. Each movement made it go down another number. The nurse said to take him off the breast he's desatting. Stopped moving and it went up right back up to 98.
Back to top

amother
OP


 

Post Wed, Jan 18 2023, 4:42 pm
Can't there be something a little bit more reliable to decide whether or not a baby needs to be away from his family?
Back to top

amother
Narcissus


 

Post Wed, Jan 18 2023, 4:45 pm
I’m an experienced nicu mom and understand your frustration. I was also desperate for my baby to come home. If baby is destating though then it might not be safe. How old is your baby and how many weeks was he born at?
Back to top

amother
OP


 

Post Wed, Jan 18 2023, 4:49 pm
amother Narcissus wrote:
I’m an experienced nicu mom and understand your frustration. I was also desperate for my baby to come home. If baby is destating though then it might not be safe. How old is your baby and how many weeks was he born at?


He's not desatting!!!! The signal was completely off because of my rocking chair! They told me they don't count if the wave from and triangle isn't full. But it's just not true.
Back to top

amother
Narcissus


 

Post Wed, Jan 18 2023, 4:50 pm
amother OP wrote:
My other pediatrician wouldn't give me his phone extension let alone a number I can call after hours. My new one is being available on WhatsApp! I will need Chaim medicals help getting him out tomorrow.

Today I literally watched the SATs go down to 70 as I rocked in the rocking chair. Each movement made it go down another number. The nurse said to take him off the breast he's desatting. Stopped moving and it went up right back up to 98.

This sounds like it was a real destat? Or were the probes off? If it was a real destat they usually keep the baby for an additional 24-48 hours post that happening. Different NICUs have different policies in that regard. I understand the hardship you going through, It’s devastating to leave a baby in a NICU.
The best way to get baby out is to just sit there and be there for as many hours as possible. Baby does best as mom is there and they get better care.
Back to top

amother
Lemon


 

Post Wed, Jan 18 2023, 4:51 pm
amother OP wrote:
My other pediatrician wouldn't give me his phone extension let alone a number I can call after hours. My new one is being available on WhatsApp! I will need Chaim medicals help getting him out tomorrow.

Today I literally watched the SATs go down to 70 as I rocked in the rocking chair. Each movement made it go down another number. The nurse said to take him off the breast he's desatting. Stopped moving and it went up right back up to 98.


A healthy baby shouldn't be desatting because of movement.
Back to top

amother
Narcissus


 

Post Wed, Jan 18 2023, 4:52 pm
amother OP wrote:
He's not desatting!!!! The signal was completely off because of my rocking chair! They told me they don't count if the wave from and triangle isn't full. But it's just not true.

ok, now I understand. If it wasn’t a real destat they don’t count it in my experience. Is your baby on oxygen and how many weeks are they?
Back to top

amother
Narcissus


 

Post Wed, Jan 18 2023, 4:53 pm
amother Lemon wrote:
A healthy baby shouldn't be desatting because of movement.

The probes constantly move and can cause a false alarm of a destat. I don’t know if your baby is truly destating or it’s false. If it’s true then as stressful as it is, baby might not be ready to come home. If it’s false it should have no impact on discharge.
Back to top

amother
OP


 

Post Wed, Jan 18 2023, 5:03 pm
amother Narcissus wrote:
ok, now I understand. If it wasn’t a real destat they don’t count it in my experience. Is your baby on oxygen and how many weeks are they?


He was off all machines for three days. The SATs were in the 90s, mostly 95. I was next to my baby most of the time. And I was watching that monitor like a hawk. I saw when signal was off and and when it was strong.

After realizing on Monday that movement was gonna keep him there I decided to keep him swaddled. He managed for an hour while asleep (has already been on me sleeping for an hour before) to keep it at 98 and above. Once he woke up back to movement and it being low numbers. The doctor didn't care about that hour and I just was working on keeping him fed and comfy. The cutoff is 95. If he's at 95 (generally it was 96 for 70% of the time) and movement is making it go lower, then that movement should be taken into consideration. They put him in oxygen last night (because of his saturation levels) and it's consistently 98-100 unless there's movement, then it goes down to 96. I was seeing it be inaccurate so many times and the rocking chair was just my own experiment that I tried. It was a different kind of chair today and much more sharp movement. It was like rock, down a number, rock, down a number.
Back to top

amother
Apple


 

Post Wed, Jan 18 2023, 5:15 pm
amother OP wrote:
He was off all machines for three days. The SATs were in the 90s, mostly 95. I was next to my baby most of the time. And I was watching that monitor like a hawk. I saw when signal was off and and when it was strong.

After realizing on Monday that movement was gonna keep him there I decided to keep him swaddled. He managed for an hour while asleep (has already been on me sleeping for an hour before) to keep it at 98 and above. Once he woke up back to movement and it being low numbers. The doctor didn't care about that hour and I just was working on keeping him fed and comfy. The cutoff is 95. If he's at 95 (generally it was 96 for 70% of the time) and movement is making it go lower, then that movement should be taken into consideration. They put him in oxygen last night (because of his saturation levels) and it's consistently 98-100 unless there's movement, then it goes down to 96. I was seeing it be inaccurate so many times and the rocking chair was just my own experiment that I tried. It was a different kind of chair today and much more sharp movement. It was like rock, down a number, rock, down a number.


Is he desatting when you move him? Or is he getting a bad wave form when you move him?
Back to top

amother
OP


 

Post Wed, Jan 18 2023, 5:17 pm
Today I was told he won't get a good signal because his foot is cold.
Back to top

amother
Mistyrose


 

Post Wed, Jan 18 2023, 5:17 pm
Maybe you should get more opinions from medical professionals who aren't involved.
Back to top

amother
OP


 

Post Wed, Jan 18 2023, 5:18 pm
amother Apple wrote:
Is he desatting when you move him? Or is he getting a bad wave form when you move him?


There wasn't a good wave form for sure. Definitely not desatting.
Back to top

amother
Narcissus


 

Post Wed, Jan 18 2023, 6:23 pm
amother OP wrote:
He was off all machines for three days. The SATs were in the 90s, mostly 95. I was next to my baby most of the time. And I was watching that monitor like a hawk. I saw when signal was off and and when it was strong.

After realizing on Monday that movement was gonna keep him there I decided to keep him swaddled. He managed for an hour while asleep (has already been on me sleeping for an hour before) to keep it at 98 and above. Once he woke up back to movement and it being low numbers. The doctor didn't care about that hour and I just was working on keeping him fed and comfy. The cutoff is 95. If he's at 95 (generally it was 96 for 70% of the time) and movement is making it go lower, then that movement should be taken into consideration. They put him in oxygen last night (because of his saturation levels) and it's consistently 98-100 unless there's movement, then it goes down to 96. I was seeing it be inaccurate so many times and the rocking chair was just my own experiment that I tried. It was a different kind of chair today and much more sharp movement. It was like rock, down a number, rock, down a number.

It’s so stressful! I’ve been in your shoes a few times and I remember the panic of if my baby destats he is stuck in the NICU for another 24-48 hours. On the day of discharge for one of my babies I was too scared to come in as the thought of him destating and not coming home was so sad.
I’m honestly still confused if the destats are real or false. A lot has to do with the nurse that’s there. The more you take care of baby the better it is. Try to be there as much as possible and hold the baby as much as possible. Why is baby’s foot cold? Are they taking temps? Is he regulating body temperature in an open crib? I hope your baby gets to leave the NICU very soon.
Back to top

amother
Begonia


 

Post Wed, Jan 18 2023, 7:09 pm
amother Sunflower wrote:
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....


I had friends with babies in maimo nicu. I have heard nothing but praise about the patient representative. She spent hours over a couple of days with one friend in particular just giving her chizzuk. She has bent over backwards for others that I know and has stayed way past her regular working hours to make sure their needs are met. She definitely advocates on the patients behalf! If someone is asking for what the hospital may feel is medically unsafe, does not mean she does not have the best interest of the infant or family at heart.
Back to top

Fabulous




 
 
    
 

Post Wed, Jan 18 2023, 7:12 pm
amother OP wrote:
My other pediatrician wouldn't give me his phone extension let alone a number I can call after hours. My new one is being available on WhatsApp! I will need Chaim medicals help getting him out tomorrow.

Today I literally watched the SATs go down to 70 as I rocked in the rocking chair. Each movement made it go down another number. The nurse said to take him off the breast he's desatting. Stopped moving and it went up right back up to 98.


My oldest desaturated when he was eating because he didn’t know how to regulate sucking and breathing. It was simple matter of giving him a few seconds to breathe every few sucks for a few weeks till he got the hang of it. Could that be it?
Back to top
Page 8 of 9   Previous  1  2  3  4  5  6  7  8  9  Next Recent Topics




Post new topic   Reply to topic    Forum -> Children's Health

Related Topics Replies Last Post
Baby girl names with Hashem's name in it
by amother
18 Today at 12:42 am View last post
Baby girl shabbos stretchies/footies
by ThisMom
2 Today at 12:22 am View last post
How to avoid vaccinating my baby until school
by amother
213 Yesterday at 10:41 pm View last post
[ Poll ] How much do you usually spend on a baby gift?
by amother
15 Yesterday at 5:05 pm View last post
by ynms
Chin to chest in baby tub
by amother
4 Yesterday at 1:28 pm View last post