Is it ok to wait one more day?

thunderstorm

Wed, Apr 04 2018, 10:57 am

ra_mom 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?

The antibiotics stays for 24 hrs , so far there were no changes and they are no longer going to administer it via IV. If by any chance the Lyme titers come back positive than they will treat him with oral antibiotics. But the doctors all feel it's this reactive arthritis to a bacterial infection he had (or virus). He is fighting me in terms of trying to move. We made progress today and he walked from the bathroom to his bed (3 feet) all by himself and it took him about 10 minutes to do. He has an inflamed knee on one leg and inflamed hip on the other leg, so it hurts to put pressure on either foot.
He also went from sitting in a chair onto the bed by himself while the doctor watched and that is also a huge progress compared to yesterday .
They have started him on anti inflammatories to help with the pain. But once he went back into bed he is refusing to come back out and I need him to be more mobile otherwise they won't let us leave!!! He has a lot of fear of it hurting so he holds himself back from trying and just says he can't. (My other kid was the opposite . He would suffer through the pain just to prove he could do it and to show how macho he was)☹️

myself

Wed, Apr 04 2018, 1:00 pm

Oh no! That sounds really painful. There's never a good time for this to happen, but Pesach probably complicates things triple fold. I hope the doctors are able to help him find relief and make progress still before the start of Yom Tov so that you can get back to your IL's in good time.

Were you able to sleep last night? Do you have enough food?

Do you know the number of a local Bikur Cholim in case you end up staying a little longer?

Hug

thunderstorm

Wed, Apr 04 2018, 4:39 pm

My DH spoke to my Rav. He said lichatchila if the hospital will allow us to stay in our room until after Yom Tov we need to do that .
If they don't than we need a staff member to order the taxi and once we reach our destination we may not leave that house until after Yom Tov dueto issues with the Tchum. He asked my DH a lot of questions in regard to the circumstances, my son's condition and age as well.

Last edited by thunderstorm on Wed, Apr 04 2018, 4:44 pm; edited 1 time in total

myself

Wed, Apr 04 2018, 4:43 pm

thunderstorm wrote:

My DH spoke to my Rav. HE said lichatchila if the hospital will allow us to stay in our room until after Yom Tov we need to do that .
If they don't than we need a staff member to order the taxi and once we reach out destination we may not leave that house until after Yom Tov dueto issues with the Tchum. He asked my DH a lot of questions in regard to the circumstances, my son's condition and age as well.

Hugs! It must feel so confusing to not know where you'll be. Do you have any provisions for Yom Tov?

thunderstorm

Wed, Apr 04 2018, 4:47 pm

myself wrote:

Hugs! It must feel so confusing to not know where you'll be. Do you have any provisions for Yom Tov?

I'll play it by air. Once I know if we are going home or not I'll make necessary arrangements . The Bikur Cholim room has been a lifesaver. I owe them a thank you letter and donation . Both me and my DS have been living off the food they provide. I really would have gone hungry without it.

amother

Slateblue

Wed, Apr 04 2018, 7:52 pm

Thunderstorm, I've been watching this thread from the beginning, I am the one you wrote up a beautiful poem for my dd gift. Dd is coming to me for the last days. I can't wait to give it to her. What I'm trying to say is that my feelings are so wanting to help you after you did this tremendous chessed for me. I don't know you in real life yet I have such positive feelings for you. And I hope in the zechus of helping me Hashem should bless you and take you out of there real quick. And your ds should have a refuah sheleima real quick!

I really hope this ends fast.

thunderstorm

Wed, Apr 04 2018, 9:14 pm

amother wrote:

Awe! You're so sweet! It was my pleasure!
Baruch HaShem the staff here are unbelievable . The doctor came to discuss how we can leave on time before Yom Tov . She wants me to ask my Rav if she is allowed to call me on Yom Tov if she discharges us early so that we have time to travel. She is also coming in tomorrow at 9 instead of 12 so that she can assess the situation early enough . The preliminary Lyme Disease test came back positive. They are waiting for another part of the test results to confirm whether it is Lyme or not. They are treating him with antibiotics now orally and with anti inflammatories as well. It obviously helped. After an hour of being on it he took his first few steps and actually took a walk down the hall.
I'm being extremely hopeful that the doctors and my Rav will all agree to this plan of discharging us BEFORE two PM tomorrow even if the lab work won't be back and as long as his symptoms don't worsen.
I will know more tomorrow. Hope you all have an amazing Yom Tov.

anonymrs

Wed, Apr 04 2018, 9:36 pm

thunderstorm wrote:

I'm so glad that things are falling into place. I've been following your eventful chol hamoed journey here. I urge you to find an LLMD (Lyme Literate Medical Doctor) to treat your son so he doesn't have lifelong suffering from Lyme disease. ILADS is a network that can help you find a dr in your area. The website is www.ilads.org.

There's also a jewish organization called Chai for Lyme. I think they have a website www.chaiforlyme.org.

Wishing your little man a complete recovery.

amother

Copper

Wed, Apr 04 2018, 9:44 pm

anonymrs wrote:

All of this ^^ . Any kinds of positives on any kinds of lyme test should be treated as a positive. Most drs are woefully un-educated regarding lyme and treatment.

ra_mom

Wed, Apr 04 2018, 9:45 pm

Wow thunderstorm, this has been some journey!

anonymrs wrote:

I agree with everything anonymrs says.

thunderstorm

Thu, Apr 05 2018, 11:38 am

Update: Chasdei HaShem! We have officially been discharged and we are now going to wait in the lobby for Totty to pick us up!!!
Hurray!
DH already picked up all his medications from the pharmacy in Monsey (the hospital doctors did me a favor and ordered all that last night so we wouldn't have to be delayed with that after discharge. That was so thoughtful of them! )
I'm so grateful to HaShem and to ALL of you for keeping me positive throughout this Chol Hamoed "trip" of ours. May you all be blessed and have the best last days of Yom Tov!
(Can't you see my change in mood😀, I think it's quite obvious )

cnc

Thu, Apr 05 2018, 11:44 am

thunderstorm wrote:

Yay!!!! Bh!! So glad to hear! Enjoy the rest of your Yom Tov!

Notsobusy

Thu, Apr 05 2018, 11:44 am

thunderstorm wrote:

I'm so happy for you! Hope he is completely healed quickly and that you have a wonderful Yom Tov!