Is it ok to wait one more day?

thunderstorm

Tue, Apr 03 2018, 9:21 am

amother wrote:

Perhaps your husband isn't aware of the seriousness of the situation? Is he poorly medically literate?

He is not from the US and just doesnt understand how things work around here. He's just exhausted an frusterated. He has been doing a lot of traveling because of this and it's just "getting to him". I tried explaining things to him and he just mutters how crazy it is. Also we spent months with my other son seeing the rheumatologist after he was discharged and then she discharged him saying it was reactive arthritis which is a reaction to a bacterial infection like a strep. He on the other hand had literally every symptom of Rheumatic Fever besides damage to his heart , Baruch HaShem . So it took a while to make sure that's not what it was. So I think DH feels like it's all drama for nothing. I explained to him that the only way to know it's nothing is by going through the motions and testing for everything . He just is finding it difficult to deal with. That's why I'm here! Very Happy

amother

Ginger

Tue, Apr 03 2018, 9:42 am

I'm sorry for the immature reaction on your husband's part. I don't know which country he is from, but I can assure you that your family is extremely fortunate to be getting this type and level of care with these number of specialists involved in your child's care in a two day time frame. There are so many children all over the world and even in the US that do not have access to this type of care and specialists.

The story with your other son illustrates the level of care and caution given to children in our society. Isn't this something to be grateful for?

amother

Amethyst

Tue, Apr 03 2018, 12:39 pm

My daughter has JRA for 1.5 years already and had an osteomyelitis in her spine last January. Shedded have some permanent damage to her vertibre from it so it’s something you would want to take care of right away. Plus an infection left untreated and turn septic so listen to your gut and do what you need to do for you son

thunderstorm

Tue, Apr 03 2018, 1:07 pm

amother wrote:

Baruch HaShem the Doctor just updated us that the MRI is negative and osteomyelitis has been ruled out. We are still waiting for the Lyme disease results and they are requesting rheumatology to get involved but we probably won't be seeing them until tomorrow .

HappyGoLucky1

Tue, Apr 03 2018, 2:07 pm

Wow thunderstorm, you're going through quite an ordeal! Sending you lots of love and hugs even though we don't know each other. It's hard to watch a yid suffering.
Try to keep your chin up, iyh you will be out of there soon and hopefully return back to normal!!! Thinking of you and your family.

thunderstorm

Tue, Apr 03 2018, 2:36 pm

So thankfully the rhuematologist came and checked him today. She ordered more tests and believes it's a form of arthritis. She is putting him on anti-I flammatories now, and continuing the antibiotics until Lyme is completely ruled out. She said there is a chance that there is a genetic component to this since two brothers had very similar uncommon situations . She said for now they are assuming it's a reactive arthritis but they have no idea to what. She did say it was more clear cut with my other child since he was sick at that time. Though she did say if ever either of them have this again and again, they would then say it's juvenile arthritis which can be a genetic thing. They both had a heart murmur during this whole thing as well. She said if he gets more comfortable and will walk around etc they will consider letting him be discharged tomorrow night. We shall see. At this point Lyme is still a possibility but she said it usually doesn't spread so quickly and suddenly from joint to joint. The sudden onset and quick spreading is more a sign of reactive arthritis. We shall wait and see.

Metukah

Tue, Apr 03 2018, 2:39 pm

amother wrote:

I don't think her husband is being immature and I don't think your comment is very nice at all. Especially hidden behind amother.

Reading your post sounds like you have a personal vendetta.

thunderstorm

Wed, Apr 04 2018, 6:45 am

Good Morning,
My pregnancy hormones are getting the best of me and as soon as the rheumatologist was honest with me and told me there is no chance he will be discharged today (though a different doctor had told me they'd consider it once I told her how anxious I am to be home for the holiday) I keep tearing up and I'm low key freaking out. I need your help in terms of logistics.
What do I do if they discharge us tomorrow either right before Yom Tov or on Yom Tov. We are staying two hours away. Let's say my Rav says we could go in a taxi , what taxi service will be willing to take us from Westchester to upstate NY two hrs away? I also wouldn't know my way there, so I wouldn't be able to provide directions. This ride would cost me hundreds of dollars but I'm not even thinking about that right now ? Do you think my DH could get a heter to drive? I have a million thoughts swimming through my head and need to calm my self down

amother

Slateblue

Wed, Apr 04 2018, 6:49 am

Refuah sheleima! My dd has jra, but it didn't develop this way at all. It started in her joints and it was after she had uveitis in her eyes but the eyes came first. No way did it look this way, waiting to hear updates.

Hugs to you. ((((((())))))). Hopefully it's simple and will be a distant memory.

cnc

Wed, Apr 04 2018, 6:51 am

thunderstorm wrote:

When I was in a similar situation recently on Shabbos , I was convinced that I would have to just stay put at the hospital over Shabbos. But I was told that I can absolutely take an Uber home. I ended up being discharged before Shabbos but got home a few minutes after Shabbos started.

Can you download the Uber, Juno or Lyft app? Try setting up a ride from Westchester to your in laws to confirm that the car service will go there. (Ask you Rav to confirm that this plan is okay).
If not, do you have anyone back home like a friend or neighbor that would be willing to host you?

ra_mom

Wed, Apr 04 2018, 6:52 am

thunderstorm wrote:

OMG

Uber or Lyft would take you easily and have directions on their own just by you putting in the destination address.
Has there been any improvement from the antibiotics, steroids?

thunderstorm

Wed, Apr 04 2018, 6:52 am

MitzadSheini wrote:

Maybe call a Rav now? Or hatzola or someone to try and plan ahead?

Been thinking about your story, what a way to spend Yom tov.

Hatzolah won't be able to help since my destination doesn't have a Hatzolah in that area . So they wouldn't go all the way there. If I were going home to Monsey that wouldn be a much bigger possibility .

amother

Slateblue

Wed, Apr 04 2018, 6:54 am

I think you could ask a nurse to call uber for you. Prepare all information before. Ask uber to give you a female driver. You feel calmer. They take people all over so no worries. Please call a rav how to go about this. Even if your discharged b4 you tov. I know a friend that was also in hospital with her child and discharged on you tov. Hatzala took care of the call for her. Call westcester hatzala and see if they can help.