NEW Update: Yochanan Meir ben Shira Yisraela

↑ cbsp ↓

Mon, Oct 30 2023, 8:58 pm

amother OP wrote:

Would love referrals to Jewish medical agencies, especially ones that deal with rare diseases like HLH, GALD, other autoimmune/alloimmune disorders.

I just want my baby to get better.

He was screaming today…silently, because he’s on a ventilator with a tube down his throat. And I couldn’t make it better and can’t even hold him right now.

Where are you located?

amother

↑ Ghostwhite ↓

Mon, Oct 30 2023, 9:01 pm

Refuah helpline and Chaim medical resource generally deal with many rare diseases.
There’s a new organization- more on the emotional support I believe- and connecting to other families with similar dx. Email SMorgenstern@hamaspikkings.org for the pillar support program.

Hope you get answers really quickly and that should bring the whole refuah easily

theoretical62

Mon, Oct 30 2023, 9:01 pm

Wow OP this sounds so so hard. Especially for your baby to be crying and not being able to hold him. I'm so so sorry. Refuah shelaimah! IyH you should have clarity soon on what's going on. I would try to reach out to Chaim Medical Resources- 718-492-8700 as soon as you can. Hopefully they can be a good shaliach to get more clarity. In the meantime, we are davening for you and your baby.

amother

↑ Chambray ↓

Mon, Oct 30 2023, 9:03 pm

Hugs OP!!!

Davening for your baby! I hope he had a refuah Shelaima fast and that you can cuddle him soon.

amother

Milk ↓

Mon, Oct 30 2023, 9:08 pm

As someone who lives in your community, OP, I also would recommend you reach out to Shoshie Klein. (You can ask DS of bikur cholim for her number.)

She is very well-connected with lots of local specialists as well as has some connection with either Refuah or chaim medical organizations. She may be a good person to connect with, because perhaps she knows if specialists etc.

↑ cbsp ↓

Tue, Oct 31 2023, 4:12 am

OP, I had a premie baby with a medical condition (he was born via emergency c due to the condition)

The hardest day that I can remember was watching him silently screaming as the nurses casually chatted while trying to find a place to draw blood. Not being able to hold him while looking at all the signs in the NICU promoting skin-to-skin... 😢

I've been davening for you and your baby. May Hashem send a refuah shelaima Bkarov 💕

amother

↑ OP ↓

Tue, Oct 31 2023, 4:48 am

amother Milk wrote:

THANK YOU. I just messaged DS from BC, hopefully will be able to connect with Shoshi Klein soon.

Thank you to everyone davening, please continue! 💗

amother

Scarlet ↓

Tue, Oct 31 2023, 5:22 am

Ds was born with a very rare platelet related disorder. He was worked up for the autoimmune and alloimmune versions. His ended up being genetic. Let me know if I can be of any help.

↑ cbsp ↓

Tue, Oct 31 2023, 6:01 am

amother OP wrote:

THANK YOU. I just messaged DS from BC, hopefully will be able to connect with Shoshi Klein soon.

Thank you to everyone davening, please continue! 💗

OP, I'm so happy you reached out to a local resource.

I thought of something else. We had a hospital social worker that helped NICU parents navigate funding (applying for state medical benefits, SSI, etc.). I don't know if that's applicable in your situation, but we didn't realize that DS couldn't get a social security number (and therefore no Medicaid, etc) without an actual name on the birth certificate (as opposed to "baby boy").

(we also asked a shaylah as to whether we could put his future Hebrew name on the document since his bris was delayed. Our Rov paskened no, AYLOR cuz I know others have been told otherwise)

B'hatzlacha!

amother

Seablue ↓

Tue, Oct 31 2023, 6:02 am

amother OP wrote:

THANK YOU. I just messaged DS from BC, hopefully will be able to connect with Shoshi Klein soon.

Thank you to everyone davening, please continue! 💗

Another vote for her, she's incredible
I can get you her number as well if you need

amother

↑ Milk ↓

Tue, Oct 31 2023, 8:38 am

OP, I have shoshis number but don't want to post it here unless you're onand then I'd delete, and don't want to PM you because I don't want my identity revealed... I will try to check back here for you for the next half hour, and then again tonight bli neder

amother

↑ OP ↓

Tue, Oct 31 2023, 8:53 am

Thank you! Got Shoshie’s number and spoke to her, she said it sounds like we should sit tight for now as the doctors are still running tests.

amother

↑ Milk

Tue, Oct 31 2023, 8:57 am

Shes also good at guiding if you need to switch hospitals or doctors,
Call her again once the results come in

amother

↑ Seablue

Tue, Oct 31 2023, 9:08 am

amother Milk wrote:

Shes also good at guiding if you need to switch hospitals or doctors,
Call her again once the results come in

Yes and she can get you earlier appointments etc

amother

Raspberry

Tue, Oct 31 2023, 5:20 pm

amother OP wrote:

Chaim medical resource helped me tremendously with my baby who had a heart condition
(845) 492-8700

Refuah sheleima!