Friday, November 20, 2009

Day 28


Another pretty good day. A few bumps in the road, but hey, what are a couple of small bumps compared to the hurdles Big Kid has already overcome?

I left a message for his neuropsych about how best to deal with the "lost time" issue, and he called and spoke to Hubby while it was my turn at the care center. Apparently his on-call doctor 2 weeks ago didn't bother to notify him that his patient was in the ICU, so he had no clue of what's been going on for the past 4 weeks. Needless to say, he was shocked and more than a little ticked off.

He told Hubby that we need to get the boy oriented to time as soon as possible, and to start introducing it as gently and vaguely as possible. Such as, "you've been in the hospital for quite a while", etc. He's going to work with Big Kid's new primary doc at the care center in case any more issues start popping up.

Our son's wide awake now. He lit up like a lightbulb when I first came into his room.

"I love you" he mouthed.

Oh my boy, my heart, I love you too. You have absolutely no idea how close we came to losing you.

He has pronounced fine motor deficits. It could be residual sedatives and stuff, or just because he's out of practice from being sick and sedated for so long. It's too early to say for sure. When I got there, he was trying to write on a clipboard, but was completely unable to. He could, however, point to letters on a board so I could write them down. (He can SPELL! He can SPELL! Hallelujah! )

The first word he spelled out was "Bette".

"Better? You want to know if you're better?" He shook his head and pointed to the word again.

"Bette? Oh, you mean Kitty's mother?" He nodded.

Bless his heart. He wanted to know how Bette, Kitty's 87-year-old mother was. She had fallen ill about a month before he did, and was recovering in a nursing facility. He and Kitty had been visiting her every day before he got sick.

The staff came in to work with him. The plan for the day had shifted from getting him on his feet to getting him talking since he was desperately trying to communicate. He was semi-sitting up, so that was a good start, and he was able to indicate when he thought his chest needed to be suctioned out which is a great sign. He's not apathetic and wants to participate in his own care.

They switched the ventilator settings and one of the tubes in his throat. With this tube, you can cover up a portion of it and try to talk. Then they asked him to shout as hard as he could, and he was able to produce a couple of light sounds. At the third or fourth try, the poor guy threw up all over the place.

After they got him cleaned up, the speech therapist painted his tongue a bright cobalt blue. This was to help them to be able to ascertain whether he is swallowing the secretions in his mouth or aspirating them. If the crap came up blue when they suction him, then it is going into his lungs. The kid looked like a smurf exploded in his mouth.

Pointing to letters on a board is exhausting, so we tried lip-reading for awhile. I asked him to be patient with me, because lip-reading isn't one of my skills. "Tell you what," I said. "If I don't understand what you're trying to say, I'm going to pretend you're telling me that you love me, and I'm going to say 'I love you too!' back atchya. Ok?"

He gave me the thumbs up.

Without the sedatives, he is actually doing a good bit of breathing on his own. They're going to start trying to actively wean him from the vent. Baby steps.

When Kitty got there, she brought his Ipod. I borrowed a docking station with speakers from The Happening Dude, but neither of us girly girls (or old ladies---take your pick) could figure out how the darn thing worked. When Hubby got there in the evening, he was able to figure it out, so the kid has his tunes now.

Hubby stayed with him through South Park, and until they got him to sleep. At one point, Big Kid indicated that he needed to go to the bathroom, but was refusing to poop in his bed. They were able to get him on a bedpan and accomplish the mission. Joy!

4 weeks. Geez. Thanks so much for sticking with us and for all your support.

20 comments:

Willoughby said...

That's one amazing kid you've got! I'm glad to hear he's doing so much better.

Pete said...

and that kid has an amazing mom!! ((attila))

Frau said...

Wow huge success so happy for you all. He is a strong boy and with all the support and love will be back to his old self soon. YAy!

Clippy Mat said...

4 weeks really? wow. you HAVE been amazing throughout this whole ordeal and big kid is obviously getting better because of your love and support.
thinking of you.
:-)

Anonymous said...

I've been following for the entire ordeal and I know just where you son gets his strength from! A friend of my son's ended up in ICU last year with eerily similar issues and to this day, no one knows what hit him. As he was recovering, he couldn't write or sign (deaf, uses ASL to communicate) for almost 5 days and he was using a walker when they discharged him, darn muscle weakness. He is now fully recovered. Thank goodness Big Kid is on the road to recovery. Wishing your family and especially Big Kid all the best.

Another mom in the Rockies,

LB @Wait, She Said What? said...

Such a wonderful post to read! I've never met you or your family but my heart bursts for you in all the good moments!

He's making great progress! I think he will make bigger steps now that he's awake as he can help motivate himself. I know the moment you get to hear his voice again your heart will be overjoyed!

Today, I will pray he finds his voice very soon as well as his continued recovery.

Rootietoot said...

This is phenomenal! I am sooo happy for you! And for him! And everyone else! Yah!

HOw sweet is that he asked about Bette. It sounds to me like nothing's wrong with his thinking.

I am smiling all day for you, yes I am :)

debra said...

Just so you know: as I was reading this, the sun came out from behind the clouds and lit up the sky.
Love and light
xox

Jeanie said...

It sounds like baby steps are turning into big steps and that BK will soon be on the run to a full recovery. Wanting to participate in his own care and trying to do things that are exhausting show how determined he is. Wonder who he got that from?

litzi said...

Baby Steps forward is wonderful news!!

It’s encouraging to learn that Kitty is still hanging in…despite her idiosyncrasies, she obviously cares for Big Kid.

(((hugs)))

Joanna Jenkins said...

Every morning I jump out of bed and open my laptop to check on you and Big Kid. I read your report out loud to my husband. Today hubby turned and high-fived me. We are both thrilled to see such good progress.

The blue tongue thing is new to me but sounds like a great idea.

You are doing a GREAT job! It's starting to feel like the baby steps are really adding up!

Sending continued love and prayers.
xoxox

Charlie said...

It is a good thing to not hear the hysteria in your writing. As Big Kid is getting stronger, so are you. And one of these days, the nightmare will be over.

Love from both Martha and me.

Ashley's Mom said...

I love when miracles happen! You, big kid, and your whole family are so strong. I want to be you when I grow up!

Cloudy said...

THUMBS UP! I actually cried out in joy when I read that he mouthed: I Love You! (Sorry coworkers).

Well, at least now you can probably guess where he caught this thing. Nursing homes are cesspools.

Chris H said...

Isn't he doing well!
I think he has improved HEAPS in the past few days... and I'm only reading this,, not even there to see it!
It's GREAT.

Rambleonrose said...

Awesome news, i jump to your blog daily anxiously waiting to hear how bk is going. He is blessed to have such a wonderful suppoort team by his side.

Green Girl in Wisconsin said...

Stride, I tell you, STRIDES!

Mrs. Holly Hall said...

interesting stuff about the blue tongue. well, AWESOME!!! glad to here things are getting better.

Does Kitty have VOLUME CONTROL YET?

just curious,

wee hee!!!

yorksnbeans said...

I was on the road all day today and couldn't wait to see how things went today with Big Kid....sounds fantastic!! I am thrilled for you and especially for him! :-)

Traci said...

What tremendous progress. I;m so glad. You remain in my prayers.