But I’m holding you, your wife and your precious Tess in my thoughts.

I’m nowhere near geographically, but will hold you in my thoughts.

positive thoughts going out and that's all I can do

but it is certainly painful to see that beautiful baby in a hospital bed without both of her parents. Good luck, kozar.

we have a family friend in medical facilities for the past 2 months, massive stroke and half paralyzed, can't even really speak. only visiting is through windows with dual cell phones or other electronic things THAT HE CAN'T DO. nurses and therapists that work with him say he's there, we think he's all in there, but the decision-making doctors who read reports and maybe see him for 5 minutes every 2 weeks think he needs to go to hospice. WTF????


sorry, I saw you were allowed to be there with your kid and I kind of lost it. count yourselves lucky and good luck, hope she gets better fast.

I understand how we sometimes "lose it" feel free to vent it on me anytime...


Koz

Can you get her regular doctor to write a letter saying she needs to have access to both parents?
Even if they wouldn't let you both in at the same time, maybe you could rotate.

Can you tell the hospital you're willing to sign any waiver of liability?
(As a lawyer, it goes against everything to suggest that, but it sounds like you're at desperation level)

You might want to ask if you can talk to someone in the Risk Management department.

Sorry I don't have any better advice.

You and yours are in my thoughts.

Her regular Dr is totally on lilbits side,,, they have conversed already
Thanks for support

As horrible as this situation is, I don't think the hospital is trying to be unfeeling. This is a horrible time for them, too. I'd still be raising he'll like you are, though.

I am not blaming the hospital, they are doing what they are directed to do,

I AM SAYING I have worked with intellectually challenged people for years. And,as far as LilBit goes, I wanna be there with her,, state "rules" dont allow,, so lets change the fricking rules. thats all Im saying
but what about parents who dont know rules like I do? they have no choice but to submit for their child.

I'll look for a legal advocate to take care of Lil Bit. I just hate that her mother and I both,,cant be there to take care of her

Koz

All the best to your family...I cannot imagine how frustrating this must be.

I went on the hospital's website and I found this - you may or may not get a Patient Advocate that will help, but let's try...

If you feel that an issue hasn't been resolved to your satisfaction by your nurse, nurse manager or physician, please contact a Patient Advocate at (352) 265-0123 with complaints or concerns. You may call at any time during or after your stay.

The visitor can’t leave and come back, although they can spend the night. They have to mask in the room, can’t leave the unit, but can ambulate with their loved one if that is a possibility


I don’t know if that hospital would make an exception, but when one exception is made, other patients and families find out about it. That’s why we make rules uniform. Still, talking to the unit manager and accelerating the issue up the management chain might be worth a try.


All the best for your little one

.

While your US Senator might not be able to get directly involved, they might know other resources to leverage.

.

And don't take no for an answer.

I'm sorry, I'm not in FL and depending on the outlook there might say that those guidelines are to protect LilBitKoz, but she really looks like she needs all of her parents right now!

fuck this virus and this administration - if he had done the right thing MONTHS AGO, you would not have to choose which one of you gets to be with her. grrrrrrrr

or Case Management or Discharge Planning. These last two can be the same dept. in some hospitals.

That's advice from my wife who is retired from 40+ years of Nursing and has held all of those positions during her career.

Someone downthread suggested signing a waiver. Unfortunately, you can't waive the rights of the third parties (nurses, doctors, other patients) who are the reason for the rule. Especially in Florida, COVID 19 is so endeminc right now that they have to limit the number of people who are vectors for infection for all the ill people who are in the hospitals.

It's essentially like the nursing homes. Hospitals are filled with a population of less-than-healthy individual (i.e. more at risk), with no means to escape infection. I haven't seen my parents since March and - until very recently - the ONLY exception would have been if they were about to die.

I know it's hard - but they are at least letting one of you in. To make it easier, try to imagine how you would feel if you infected someone else - or, worse, if the extra visitors they allowed someone else (who begged for special treatment) infected your daughter.

If you can figure out what the predominant need will be for the day - choose the one who best meets that need. Ask the doctors to help you plan for your daughter's needs. It may be impossible, since things may come up at the last minute - but at least you can try.
Beyond that make sure whoever is inside has a device that they can use with facetime, zoom webex, etc. Anything that will let the outside person connect electronically.

Im doing what Im doing,,I am a bit "tin foil ", if you will and know how cell signals work within that hospital as I could not communicate with Mrs K,while lilbit was one room away,but, "behind that door" and they infiltrated lilbits IV twice,, but I could not communicate that to mom..a room away,,

Koz

but my daughter is a $200,000 a year kid (and has been for a decade or so - for the 16 years before that she was "only" a $50-$100,000/year kid). She started with a colonoscopy at age 4. So we're in hospitals quite a bit - and never had any issues with connections. Sometimes they are maddening because they rely on a local router - so I have to log in again when I move 10 feet. But once I get in place, the connection usually holds.

I always use the hospital's wi-fi (I don't have a data plan), so I don't know about cell service. If you haven't tried connecting through their wifi, you might want to try it.

But as to sick kids - We have only once left ours in the hospital by herself once, for about 2 hours (after she'd been trained to speak to doctors and nurses for about 8 years). Her hospitalization coincided with a major event for my spouse - so we got orders there wer not to be any procedures while we were gone and I ducked out long enough to put in a brief appearance.

Fortunately, or not, we're a one-stop-comfort shop. The only time she needs my spouse instead of me is when the procedure is likely to be bloody (stitches, for example). Despite having been present with rape survivors who have been stabbed in the heart, had tendons in their hand cut, etc., I pass out when I see my spouse's or my daughter's blood. Go figure. But my daughter and I are in sync as to her reactions to medical procedures. I know she's absolutely fine for far more than any (then) child should be able to tolerate - she can watch them insert IVs. I've had to fight nurses off who typically come in with three of them who want to hold her down, when she just wants to watch. They don't believe it, until they see it. But once she loses it, she has no more tolerance for anything. I can see that happening before it does - and save a lot of grief (by firing an incompetent phlebotomist, for example, who took one stick too many to find a vein). Life would have been much harder for both my daughter (and the medical staff - more the medical staff) if my spouse had been there for a few of these incidents. So I get the need to have the parent you need with you.

But I also have a very healthy respect for this virus. It's robbing us from so much - and from so much more than it needed to rob us of had we had a competent president.

Good luck!

I am just the opposite of you it seems when it comes to blood and such. I get squeamish a bit when I see it on others. But for some reason when I see anything on Lil,or Mrs, I kinda blank out and go into my med training mode, and dive right in. it is strange how the mind works. I am thankful that her Covid came back negative,, seems my precautions for last few months have worked. I'll continue to take care of Tess and Mom with all that caution also. Thanks for sharing your story.


Koz

Of involving a family doctor. The best of luck to you all!❤

Do everything you can.

But also the hospitals. It is bad in Florida
What about COVID tests for you and your wife?
If they were negative would that change their minds?

not Mrs K as of this morning.

The fact is,once they come home,,Im in self quarantine as they will be,,simply because they were there and I live here.


Koz

Sending 💕💕💕💕💕💕as that’s all I can do! And a unicorn for lilbit.

if both of you are able to be with her.

One person should be designated a caregiver, whereas the second is the visitor. I think designations may help. This way, you can also trade off so that you're able to take turns getting rest, etc.

I'm sorry I don't live there to help you. An IEP or care plan from current state caregivers or school program may help. Same, if you have legal guardianship. If you do, ask your guardianship lawyer to call the hospital lawyer.



I'll say special prayers for her and other special needs people needing medical care.

Covid.

Covid is stressful on nursing staff.

It is HEARTBREAKING to see the emotional torment our patients and families are suffering. Out of sight, away from our patients and families many of us are crying on a pretty regular basis right now. So much suffering and death and pain, and always the ever-looming threat that we will infect our own families. If I have a family member hospitalized I will be very grateful if they can have one visitor from the outside. I understand too well the risk staff take by letting each person in.


Please understand visitor restrictions are one of the very few things available to us to hold an absolute apocalypse of our own ranks at bay. So many nurses have already been sickened and died. Who will take care of you if more of us fall? Restrictions are not randomly conceived, and they must the same for everyone.

We need to hang on and hang together until we can get adult leadership and science back in control.

My brother (I am his only relative) is in a home in Tucson. There have been no visitors allowed
since April. At least I can call.

how thankful we are for all the DU love,,
I apologize if I'll be gone for a bit,,Im gonna fight some Fla mandate that says BOTH OF LILBITS parents cant be with her at same time...


Koz

Your family is in my heart tonight. I don't pray often, but I will say a prayer for lilbitkoz.

Truth is,,Kozar will not see LilBIt again until someone who makes the "rules" in Fla, tells Koz he can see his daughter again,,and LilBits Mom can take a break and eat some real food!

KozFighting

1 unit of blood given,, I just spoke via text with MrsK, they have put LilBit in step down ICU unit. I am trying to get a direct line number to room, MrsK is so tired that Im even having trouble getting her to focus right now, while Im trying to work things from this end to give her a break. I made some chinks in the wall overnight. Some are from suggestions that were made here. LilBits HandH is still at 6 and 19,, after 1 unit of blood.
Thank you all for thoughts,prayers,and as we do here the suggestions and more. I am reading them all and seems we got more than a couple of people out of bed last night, who are contacting me already. (and 1 contacted me at 2am and asked me to be patient until they got in office at 9a if I was comfortable with that)

I humbly thank you all for the help,

Tess's Dad

Please send it her way too.

Ty for all the help

...

The hospital COVID restrictions are necessary, appropriate and important.