Journal of a thousand, ooops...I mean two days

The bronchoscopy went well yesterday.  He found nothing to be concerned with so he also removed the trach and put in a temporary button.

Happiness overflowing!  His voice was  

completely back. He was like his old self.

Only the nose cannula, for the oxygen that he still needs.

Happy guy!

XO

Sittin’ by my man, holding hands, and lots of exchanges of twinkly eyes and goofy ‘first date’ smiles; half way watching a movie. It’s our way. I make him pause a dozen times for this and that; he rolls his eyes, grinning and shaking his head.

Even more pauses that aren’t always my fault. He pauses to tell me something and then something else which leads to a conversation.
We smile. It’s just how we watch a movie. And I wouldn’t have it any other way. Just me and him. My man. My love.
Heaven.

What movie?  You ask?

I forgot. 

XO

I recently put an alarm on my phone set for noonish.
The song that plays is:
‘I can’t smile without you.’
Barry Manillo
gotta love him!

The song is my reminder to find at least one positive thing to be thankful for. Just one. More if I can rustle up some. But one at least.

David asks, What’s that for?’  ‘It’s my reminder to find something to be happy about.’
‘Oh that’s nice,’ he says. ‘What did you find today?’
I look at him and say,
‘You.  I am just so glad you are here and alive.’

In the midst of ‘behind the scenes turmoil’ that I try to manage myself 

so David won’t worry, 

my alarm comes on; I 

smile; and for a minute I rise above to catch a happy thought.

I can’t smile without it!
XO
Shelli.

And then.....morning came and the Doc stopped by to see how he was doing. He also removed the trach button and covered the hole with gauze and tape to allow it to close.
‘I will see you tomorrow then, ok?’ Says the Doc.
Magic words to my ears as I’ve had to deal with these ‘get outta my house’ people.

Talk to my Doctor, yo. ;)

XO

Blue clouds...
With the trach button out and the hole covered with gauze and tape, his speech is not as good and the struggle to talk is back again. (Because there is a little air getting through). It’s very temporary, nevertheless, he was a little down. He liked talking without difficulty.
‘It’s coming. Not long from now.  It’s ok.  I love you...’

XO


On the way to the hospital yesterday, I stopped at Snap Kitchen to pick up David meals. I find it so much easier to do that, although I would love nothing better than to prepare all of his meals, but this girl has to find a little easy in her life.

Their meals accommodate David’s allergies and the calories, protein, carbs, etc...are all listed.

We have to keep a food log of all he eats so they know he is getting enough calories.

And an anonymous angel paid for all of my meals. It’s a longer story than I have time to write. But it was a wow moment!

I needed one.

XO


Off goes David to his swallow test after eating a mechanical soft diet for a week.

Passed with flying colors!
The diet changed just a smidge. The speech therapist will check on him tomorrow to see how he is doing. If he does well, he will get finally get his diploma!  ;)

Things are moving forward a little faster than a snails pace.

Niiiieeeeeccccce...

XO

We went to share the day before the holiday of Passover with David, which is called preparation day. We brought a small broom and duster to sweep up any leaven. It’s just a thing we do. Tradition. And it’s fun. 

We brought a few things they he can now have without thickening them up. It was a double celebration. It got late, so we spontaneously just stayed the night...all of us. 

Being all together was so sweet. Do we have to leave?

Next morning, I left Matt to help David with his needs and food AND company. 

Me and the other two left to make the house festive and to plan our ‘snap kitchen meal’ to bring to David’s room so we can all be together. 

If he can’t come to the party?  We will bring the party to him. 

Chag Sameach, ya’ll

And X’s and O’s, too 

Ps... the back of my mind holds all the stress I am trying to manage, but today is a vacation. Those things will still be there tomorrow, so tomorrow I will greet them,

Hopefully not with a grimace. These social workers are vultures. Like really. The ICU social workers were amazing! (But they aren’t for sale on the fifth floor.) 

Oh well, I’m learning to stand tall. I’m pretty short, and a few inches taller definitely won’t hurt. Anything for my man; anything! 

XO

Shelli

Back to those lying ways

The beautiful and amazing rehab with skilled care that only charges 295.00 a day....
I call again to save David a seat. Here is what happened:
‘Oh, 295 is just for the room. The therapy is in addition to that. And then there are...( she lost my attention at ‘oh that’s just for the room.)

So...back to square one.

They are eagerly trying to move us along at the hospital, but hanging on to the Doctor’s words: ‘you are not ready to go home yet.’

And then David saying he is so ready to go to rehab.

‘Ummm ya, about that....’
Words floating through my mind but do not escape my lips.

I will go back tomorrow to the rehab and try again...
‘How many days will 5,000 dollars get us?’

I am just at a loss here.

On a positive note, he is eating well. Small portions, but you have to start somewhere. He is now at 134lbs. Just last week he was 120lbs.
Remarkable!

Tomorrow at 7am Dr. Long will do a bronchoscopy. A minor procedure that shows the Doc if his airway is clear and open and to clean up some of the phlegm that won’t come up. He will also take a biopsy of the area where the lung looked problematic on the X-ray a couple days ago.

It’s possible, if all is well, they will decannulate the trach.
He will still need oxygen, through a nasal cannula.

He is so weak that he is not able to stand up alone or go to the restroom. They are working on that daily but not as much as a rehab would.

If anyone were to come to me and say God is mad at them, I would vehemently disagree. And tell them that He is not that way. He loves us!

But, I find myself thinking the very thing.

And I am terribly scared.

XO
Shelli

Eating and Drinking and Being Happy

Shielding David from the truth only lasted one day. The very next day, he passed his swallow test and was in much better spirits. I thought I had updated that I told him everything. Sorry for that.

Yes, it was a blow for sure. But we are all carrying the burden now together.  And things are going to be ok.

He was really so down before passing the swallow test.  But now he is in much better spirits and has more of an incentive to really give his best.

We were with him today. The food issue is challenging. I’m confident in the food he needs but it’s not very easy because they don’t have a refrigerator for us to use. So we bring small portions daily.

Today he had two peeled apple slices with almond butter.
Two tablespoons of dry cereal with rice milk after being soaked until it was soggy.
Blueberries throughout the day.
Plant based protein drink.
Two bites of sweet potato
He eats small portions five times a day. I leave him with easy things to eat when we leave. Applesauce, protein drink thickened, blueberries, etc.  things non-perishable.

He doesn’t have much of an appetite. But is very eager to eat nonetheless,
Only to be full after one or two bites.

He’ll get there.

He didn’t feel well today, so he ate even less. His chest was hurting and his breathing was shallow.

A respiratory therapist who works in NICU helped him today. She had never helped him, but oh I wish she was the only one helping him. She was gentle and kind. She didn’t hurt him and explained everything as she went. She didn’t rush and she really gave David peace of mind concerning many things.

We laughed and talked about our puppy and kitty antics and things we laugh about when we are sad to try to survive the moment. We tried to go home for an hour but just lingered and laughed about good times. It was fun and happy and peaceful.

I find myself assuring him everything is going to be fine. He’s usually the one telling me that. Now it’s my turn. He looks worried and vocalizes concerns. And I say it’s going to be ok. It really is. Although on the inside I worry, too.

But what can we do about it?  Today is all we have and everything we needed was provided.

So, on we go. ;)
XO
Shelli

https://www.gofundme.com/whileyouweresleeping

Peace of mind..sort of

Sorry for the delayed update. The past few days have been pretty overwhelming.

I don’t have a lot of time right now, but I did not want to leave you hanging.

I learned my rights as a patient advocate on my own. I discovered medical lingo that I can pull out of my deck of cards to bide time.

One of which is ‘I do not feel your discharge plan is acceptable. And many things need to happen before we are discharged.’
It quiets them for a while.

Our status for long term  disability is pending.  Our status for Medicare is on hold until the Doctor fill’s out a form that we have not received yet.

The Doctor is the one who brought the form up and told us not to go through the nurses but to give it to him and he will take care of it.  Because of David’s status, he is pretty certain that it will be approved.

Normally, Medicare is for those over 65, but sometimes, in extenuating circumstances, they approve Medicare for those under 65.

It will take a while for any of it to be in effect. But it is in the process. It could take as long as six months.

Davids lungs are very scarred. His quality of life could very well be affected.

The doctor said,’Will be affected.’  But there is always hope. And I still have a little for the moment.

It is possible that at some point he will have to get a lung transplant.

The doctor said,’probable.’ But there is always hope, right?

It will probably take him the whole year to recover. The doctor thinks his quality of life will be very affected.

And although he said many negative things, we know, without a doubt, that he has our back. He says we aren’t ready to be discharged yet.  Peace of mind...

I’m glad the transitional manager doesn’t have the final word.

David looked good today. His cheeks had color and his eyes sparkled. We are almost at the end of this chapter and on to the next.

I toured a rehabilitation hospital today. It was really nice. It is possible, if Medicare is approved it will cover thirty days and then  after that we would only pay 20%.

Hopefully he will only need a month. I don’t see why not. He will get two to three hours of all the therapies (speech, cognitive, and physical)

And hopefully we will be approved. The process can be quite long and we may have to come up with the money in the interim.

Whatever we have to do, we will do. He will get help one way or another. And I just have to believe everything will be ok.

Thank you for caring and praying for us. It means so much. I want to write more, but I am so tired. I just wanted to make sure you had better news than the last post.

Everything is going to be fine. I’m going with that.

XO
Shelli

Ps.  After rereading this post, it seems very  scattered and I repeat myself. I also accidentally ran two red lights today. I think I need to close my eyes...