Admission charge

[Barbie]

HI Doug,

I am from Orlando too. Mayo is a very long drive but worth it to get a second opinion. If she has a diagnosis, she can get medicare and disability right away. I would also call ASAP on that long term care policy. if you can get her doc to prescribe home health car that may be good for you guys. I didn't love it, but it was a good start.

it doesn't sound like your GP is on the ball...I would really suggest the Mayo or the USF clinics--they will be very responsive to her needs and can help get her stabilized.

best of luck

 

[SMP51]

sorry you have found yourself needing to join our club, but you will like the folks here, they are the best kind s of people

 

[gooseberry]

I know someone who comes from NYC to get care at Mayo in Jacksonville because he feels it is so much better and more reasonable. We have had a good experience so far with everyone at the USF clinic. Getting in was difficult though...it took about 3 months due to retiring doctors and reorganization of clinic.

 

[abnorm]

Oh my......such wonderful responses from you all....Thank-You

This is the weekend....I have NOT been able to contact the Neurologist yet concerning LEMS......she has the diagnosis of ALS (which we have embraced) ......I'm just not ready to celebrate "hoorah..... it's only lung cancer"......If I become a burden: Please banish me to La-La-land

We have switched the whole team......All Drs. are new from Florida Hospital......We have Home Health Care.......the wound nurse came for the first time today and he had several suggestions......Stage IV wound.......Manny "Golfs" with her new GP!......a few texts later and "YES I'll order/sign whatever wound care she needs"........How about a visit to the outpatient wound clinic at the hospital once a week ? Set it up!

And he knows a manager at the "Mattress" DME....he'll call............Yeah Manny!

Hi Barbie.....we're just south of the hospital in Colonialtown....we would go to Mayo in a heartbeat (and we probably will as health allows)

I truely Thank You for your thoughts.......I know that you are fighting the good fight and I ask God that your prayers are answered .......dougandpam

 

[affected]

Welcome Pam, you have already been given lots of good advice and tips. That's what this place is all about.

I'm already in la la land, it's a great place and I think I'll stay there

 

[MaxEidswick]

>I'm already in la la land, it's a great place and I think I'll stay there

lol!

 

[abnorm]

DAMN.......Call from the Home Health from the Doc.......routine blood work shows extreme white count needs IV antibiotic......OMG another Sat nite in the ER!

 

[LoveMyKids]

So sorry that you have reason to join the club. The forum can be so helpful and comforting, though. Just knowing you are not alone and can vent all you want is a big help. I commend you for taking such good care of your wife.

Sorry about the ER visit. Hope that things go smoothly!

Be assured you will never be banished. I am a permanent resident of LA LA Land and am content in my craziness.

 

[affected]

Doug, sorry that you have to spend more time in a hospital with Pam. Let us know how you go, they are such awful places to be with a PALS and so exhausting.

 

[gooseberry]

Doug, Just an idea going forward. I keep a small bag with protein bars, water, carb heavy bars, etc that both of us can eat. That way when we need an ER or hospital trip its ready. Also keep a med list and small medical chart in there. It comes in very handy.

 

[abnorm]

Thanks Gooseberry.......I use a homedepot toolbag....a guy thang......sissors/pen/sharpie/reading glass in outside pockets..... inside a nail kit with extra bandaids/antibiotic cream/(pills if needed).....Writing Pad and papers/photos.......add my Pepto and some throat spray.....gatoraid some nuts and M&M's.....a hand/sweat towel
I dumped it out the other nite and had almost $10 in change as dead weight in the bottom !

We'll be back home on Sunday.....a UTI needed IV antibody.....had a couple IV sites fail this week and still the Dr was going to send us home early with "Home IV Support" ? Thank God someone came to their senses and said let her finish infusion in the hospital........

Damn she got a nice bed this time....a Clinitron.....like a heated bean-bag-waterbed......Pam's not especially thrilled with it but she's healing SO GOOD! She says she fells like its quicksand trapping her....... The bed blows warm air on your bottom....and she's gone Commando!

It must be the sleep patterns.....I can't THINK clearly anymore.......I often find myself daydreaming

In the hospital ....when I'm there....I've taken the role of her routine cleanup caregiver......We call for the nurse but I just take the lead and let them assist when they arrive.....I take care of the cleanup and change the soiled dressings under their watchful eyes........They learn our "normal" methods and can use that when I'm not there......they love to "raise the bed" but we don't have it easily available at home so I 'm used to working at bed height......and with a GreatBigBelly and fixed bed rails it's easier down low

Oh damn I think I scare the "girls" ......in "caregiver" mode I remove my Luau Shirt and let my fat belly hang free........iiwii

We Did get the referal to the Mayo Clinic.....paperwork sent......as soon as she's ready to travel we can get in.......still waiting on info if BigInsurance will pay for the '2nd opinion'

She got the alternating mattress just before she went to the ER......a new ROHO wheelchair cushion made it to the hospital room

As I sit across the room watching her sleep I wonder what's the soundtrack that's playing ?

I still remember the early days........."The First Time Ever I saw Your Face"....and I knew our joy would fill the earth and last 'til the end of time.......

But these days sound more like..... " I Dreamed a Dream" in time gone by.....When hope was high and life worth living...................................

Goodnite....
dougand pam

 

[gooseberry]

At some point things will hopefully level out a bit and you will be able to catch your breath. I, too, feel like a lot of dreams have ended. In the begining there was a lot of crying and deep emotion over that...now just sadness. We are at a place where my husband will talk about it with me. In the beginning he couldnt discuss anything about his disease and was living in denial. Now he talks openly about it. I tell you this because you will go through so many emotions and stages. Fatigue and stress make it worse. Anything you can do in the easier times to relieve it, grab hold and do it. If it is taking a walk with Pam at sunset, or a little drive, having a movie out...anything you are still creating beautiful memories. They may be very different ones, but beautiful .....

 

[gooseberry]

Doug, I forgot something. We have Aetna. They had no problem paying for a.second opinion. Generally its not a diagnosis they want anyone to have either. So we went to a total of 3neurologists...2 and clinic.