Where do I begin...

Where do I begin...

Is it better to write 10 parts instead of one long one?

For fear of losing you, I will do it in parts; at least I will try...please don’t leave!

Today...started with David being very down. So tired of the day to day sameness and not seeing significant progress from day to day.

And on top of it he said, ‘I’m really down today. And I know you have to go and that makes me even more sad.’

I had spent the night on Monday and was with him this morning. And yes, I was about to go without really ‘acting like I was going’ but he knew. And he wanted me to. The kids need me. We both feel that ‘torn between two’ tug, and it’s not a happy place.

And then there was this.... Dr. D handed us over to Dr. L because he had other patients at two different hospitals. And Dr. D is so positive and keeps me in the loop. Dr. L will, too, I just have get used to his abrasive abruptness and and brutal honesty.

‘He would already be in a rehabilitation hospital by now but you don’t have insurance, so...’

‘Your lungs are so damaged it is hard to say what kind of life you will have after this.’ (And blah, blah, blah)

‘There is not much more we can do.’

‘Maybe a rehabilitation hospital will take you on as charity, I don’t know. You will have to talk to the social worker.’

Cold, hard truth, the way ‘he’ sees it. But it’s hard not to believe it.

You get the picture. I don’t really want to remember every detail right now, to tell you the truth.

The social worker....

She has been trying to talk to me ever since we have been on the fifth floor. We just keep missing each other.

I wish we would have missed each other today after her kind ‘daggers.’

‘We need to discharge him soon.’

‘If he can’t pass the swallow test, you will just have to feed him through his stomach tube three times a day; breakfast lunch and dinner; just like us.’

‘And if you can’t afford 1000.00 a day for a rehab hospital, you will just have to learn how to help him on your own.’

‘Social security lied to you about long term disability. They will most likely reject your application for assistance several times. Maybe they will finally say yes, but that money won’t come in until at least six months. And you won’t be eligible for hospital or doctor care for two years after they accept you, if they accept you.’

(Ok. Great. Can you give us any more bad news? We had high hopes that social security was going to see us through some tough months ahead. Yes...we will still try. What else are we going to do. Give up? Not an option.)

‘So where do we go from here? What about after care and follow up and how will we manage? Is there any other help?’ ,we say.

‘No, I’m afraid not.’

I am so glad I asked her to talk to me outside of the room, although I could tell she wanted to be in the room.

I had gone home, picked up the children and returned to the hospital by then. My mom also met us there to cheer on David after hearing how down he was and what the Doc said.

‘ I have power of attorney; you can talk to me alone.’ (I hate using that card all the time, but dang...I feel like I ‘have’ to...)

No, no, no....I will not tell David all her bad news, too. I need to keep him positive. He’s depressed enough as it is. Geez.

Hannah was also with me when I talked to the social worker; or rather, her official title of ‘Transition Manager.’ Transition you right out of this hospital kind of person. We did our part. He is stable. Now he needs to go home, with the trach, with the stomach tube, and you need to educate yourself and learn how to take care of him since you are poor.

Ok.

And so, me and Hannah get our story straight before going back to his room, where he and the boys are. We winged it mostly.

David: What did she say? What is going on?

Us: Everything is fine. She helped us with social security (ya, she helped us right down to the lowest floor on the elevator) and gave us information about rehab,’(that we can’t afford nor can they help.). and on and on and on.

Yes, we are liars. We go back to the room and say:

‘She said me and Hannah need to help you every day.’ (Because, let’s face it, discharge is coming much sooner than we ever thought.)

‘You are going to have to sit up, even though it’s uncomfortable. Here, let’s try it this way.’

He did. And did great... until he started coughing so much that it was activating his gag reflux.

Uuummm...painful to watch. But... he NEEDS to. He is laying back all the time and the sputum is just settling in his chest with no where to go. And ‘yes’ the cultures came back and it is bacterial, so, on antibiotics again.

So you can really understand his unwillingness to do things that are painful. He is the bravest and most resilient person I know, but this here? Resilience is a dream away to him; he has been through so much.

The physical therapy guys are always trying to get him to sit up but that man of mine is back to himself in mind only and he is pretty ornery. I definitely don’t blame him. He wants this to be over way more than we do. And we want it pretty darn bad.

He has walked to the nurses station and back and down the short hall to his room. Walking meaning with a walker, shuffling his feet forward with the PT guys following close behind with his recliner.)

Pictures worth a thousand words...

Hannah’s stubbornness against the king of stubborn. ‘He be dethroned by her.’

Slumber party, yay!

(His bent bony legs and sitting up straighter...it looked like a slumber party for girls telling all kinds of secrets. Hey, we are desperate for humor, and we laugh at what we can, although I will not tell you everything we find humor in. You would think we are very disturbed.)

His ‘look’ is worth a thousand words, for sure...when he doesn’t want to do something and he is bull headed. Then Hannah comes...and he usually gives in.

(In the next paragraph when I refer to 'she'. I am referring to the social worker...who really didn't say any of the following things....but desperate times call for desperate measures.) 

‘She’ said we have to help you sit up straight.

‘She’ said .....(all the things he needs to do but doesn’t really want to do because they are quite difficult. Did she ‘tell’ us that? No. But we are desperate; a girls gotta do what a girls gotta do.

So now we embark on tough love. I DO NOT like tough love. It is ridiculous!

We blame it on the social worker who ‘told us to help him’ so he will listen.

Me and Hannah make a really good team. We take turns being good cop bad cop. And, omg, David gives in to Hannah 99% of the time. Me? Not so much. He is his mother’s son. ‘I am what I am.’ Heals dug in and firm. But Hannah, here she comes and melts him all over the place; that girl! (Yes, I am taking lessons/notes...)

But this is a call for extraordinary measures. And that is what we dewin... lying our ‘bleeps’ off to get him to bend to our will, for his own good so he’s not left high and dry before his time.

I asked the social worker, ‘So what do we do now? What ‘can’ we do?’ I asked this question at least five times before she really answered me.

She is a lot like Dr. L but in a more passive sort of way.

‘Not much. Hope social security helps you, but good luck with that.’ (Basically...my interpretation; albeit leaning a little (a lot) towards snarky.)

And so that is my story. I am not sure I will stick to it, but for now, it is what it is.

So...

help David,

sleep,

repeat.

XO 

Shelli 

P.s David said, 'Did you spike my hair???? (in tranglish but authoritative nonetheless) 

"Yes hunny, I did. Its more manageable and very modern; I will bring you some gel tomorrw and it will look great." 

And to that, he rolled his eyes with a smirky grin

Humor...the glue that helps us not fall apart completely 

PPS> Sorry folks, ten parts all in one. I hope you are still there...lol