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Forum
-> Parenting our children
-> Infants
Perech
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Sat, Nov 28 2015, 10:27 pm
Anyone had a premie with RSV? What was it like? Were you approved for the synagis shot? Did it help wonders?
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amother
Scarlet
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Sun, Nov 29 2015, 10:04 am
Yes, I had two preemies who got rsv, after NY insurance denied them synagis. It was only once their sibling contracted rsv (confirmed the day before my girls got it) that my insurance approved synagis. It was too late for that void of rsv and they spent several days in the hospital. After that they received synagis for the remainder of that rsv season.
The following year my insurance denied them again. But luckily they didn't get rsv again.
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amother
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Wed, Jan 13 2016, 6:11 pm
My preemie just got rsv. We got him the synagis shot but it didntbhelp. He is in the picu on a ventilator. Has anyone had this? Looking for some chizzuk.
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the world's best mom
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Wed, Jan 13 2016, 11:52 pm
I have a niece and a nephew who were hospitalized with RSV. One on oxygen and one on a vent. It is tough, but B"H babies usually recover pretty quickly and get back to normal.
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November
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Thu, Jan 14 2016, 5:44 am
I had kids hospitalized for RSV. They received Synagis shots for 2 years, I think. IMO it's worth it. But you must keep baby away from anyone with a cold/cough. It's not forever - just now while baby is medically fragile.
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notshanarishona
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Thu, Jan 14 2016, 5:54 am
My daughter had rsv when she was a few months old . She was hospitalized for a few days but it took months to get back to herself.
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amother
Forestgreen
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Thu, Jan 14 2016, 5:35 pm
I have 3 other school age kids. How am I supposed to keep my 3 year old away? Im terrified that after all this it could happen again?
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Kugglegirl
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Thu, Jan 14 2016, 6:23 pm
For the Mommy with a preemie on a ventilator--
My baby was on a ventilator for several weeks when she was 7 months old with a respiratory infection similar to RSV.
I don't know how young your baby is, but here are somethings I learned and did for my baby-
Tried to stay with her and give her comfort with singing, holding her hand, showing her toys- when they are on a vent, the meds the give include anti- anxiety, and sedation meds that are very strong. When they see the baby's heart rate or breathing rate increasing they want to give a "rescue" or PRN dose to bring the rates down.
This is basically them giving your baby an extra dose of narcotics- so what ever you can do to help your baby feel comforted and calm will help reduce how much narcotics they are giving your baby.
Try to be there when they do rounds. Ask the nurses questions before rounds so you know what is happening & then ask the important questions to the Dr's. Advocate for your baby & make them explain to your satisfaction anything that does not make sense to you. You have a right to have a say in all the medical decisions for your baby. You can refuse any procedure if you do not agree to it.
If you are pumping milk, try to keep pumping. Drink & eat & rest when you can.
Bring in your baby's toys, books etc. and do what you can to make the room personalized--I felt this helped both me & the baby---
The nurses can help you find a way to suspend toys in your child's line of view.
Try to put toys under your baby's hand with different textures that your baby likes.
My baby really liked looking up at balloons.
I feel like it is important to keep doing things to promote the baby's cognitive development. The baby is still cognitively developing and playing with the baby, talking, singing etc. will help the baby.
Ask if there are volunteers. Contact Chai Lifeline or your local Bikur Cholim if they have not been in contact with you yet.
If you have close friends or family members who will help you and take turns being with the baby, do ask them.
Refua Shelama
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JAWSCIENCE
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Thu, Jan 14 2016, 7:20 pm
Kuggle your post sounds very adversarial and as a physician it makes me feel sad, like your doctors failed you. I hope there wasn't a bad experience that made you have such a confrontational take on the care being provided. I do not want to hijack the thread but is there advice you would give your doctors to help them better connect with you? I am glad to hear the baby is doing well!
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Havtcha
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Thu, Jan 14 2016, 9:25 pm
My son too also had RSV when he was thirteen months. He was sedated for one month and to quote the doctor was the "sickest child in the PIC at the time." Coming off the sedatives/ the vent was all a stress as is every single point of it. He is now three years old and an adorable little child that you would never know at one point was on a ventilator and was so sick. My heart goes out to you. Like the others said, read to your baby, hold the baby and of course daven. Chai lifeline and bikur cholim were there through is through it all. Contact me for any questions.
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amother
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Thu, Jan 14 2016, 9:53 pm
my daughter had RSV at 1 month old, (was full term baby) it was a very frightening experience. she was hospitalized for 4 days and on oxygen..you have to be your babys advocate.. some nurses were dedicating and caring others not so..after discharge we continued with nebulizer and suctioning her nose with bulb at home and the cough lingers on for a couple of weeks. The worst of it is over after about a week..Hatzlocha!!!
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Merrymom
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Fri, Jan 15 2016, 1:21 am
My daughter wasn't a preemie but had this at only a few weeks old and it lasted for months. I didn't even realize that I had been holding my breath for all that time. She was being examined every day ( at first twice a day) for weeks, on a nebulizer every few hours, and all I wanted was for her to just get better. When I finally was told that she was all better I literally felt my breathing ease and a stone just slide off my back. It was very traumatic so my bracha to you is that she should have a refuah shelaimah b'karov. I feel for you and wish you much nachas from him.
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tweety1
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Fri, Jan 15 2016, 3:22 am
Refuah Shleimah. Rsv is scary! My son had it when he was 7 weeks old. Was by dr for heavy exam every other day. In the first week of the Rsv had too be on nebulizer every 3-4 hrs around the clock even shabbos! For my ds is took abt 2 months to get rid of it. Bh he wasn't in the hospital for one reason cuz he didn't have fever. Dr told me the second he gets even a slight fever he's into the picu. He's 2 yrs old now and is the cutest rambunctious trouble maker ever.
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Kugglegirl
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Fri, Jan 15 2016, 8:42 am
JAWSCIENCE wrote: | Kuggle your post sounds very adversarial and as a physician it makes me feel sad, like your doctors failed you. I hope there wasn't a bad experience that made you have such a confrontational take on the care being provided. I do not want to hijack the thread but is there advice you would give your doctors to help them better connect with you? I am glad to hear the baby is doing well! |
Dear Jawscience,
I considered myself an active member of my baby's team. The nurses and doctors, respiratory therapists, nutritionists and other members of her care team appreciated my involvement and accepted many of my suggestions for her care. I feel that the doctors did very well, and were appropriate in their roles. Their specialized knowledge and experience was invaluable to her recovery.
The nurses, of course, are the real backbone of the hospital and the ones who made me feel secure that my child was getting the best care possible. I felt very glad for the many amazing nurses who I worked with in my baby's care.
Parents do know their child best. The PICU team sees a very sick baby as she comes in, and each specialist concentrates on addressing the concerns particular to their knowledge and experience.
Seeing your child in the PICU is a traumatic experience and parents should be given appropriate support in the setting, as well as support for when they leave the setting.
There is more to say on this, but I think not everyone is interested in a detailed discussion right here right now.
I have written a longer response about advocating for a child when in the PICU. If anyone would like to read that, you can PM me.
Wishing a refua shelama to all the little children in the PICU and the NICU, and a shabbas of menucha and refua for all.
Kuggle
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