Tuesday, November 27, 2012

I Can Do Hard Things

Bradley's seizures are not stopping.
We have added another med.
We are on a schedule to up the second med.
And the original med is going to be stopped if he transitions well.

But very often during the day he gets stuck.
And he does come back. But it is very scary for me.
And he has been sleeping 16 hours a day, because seizures are hard.
And he has a lot of secretions, which is common with his type of seizures.
And he chokes a lot.
We use the vest religiously!!
It's my only hope.
Neurological problems suck!!

And today I took the kids to the store to get Jacob some new pants.
All of his jeans have holes in the knees.
And we stopped and got a Slurpee on the way.
And it is a pain to unload my sweet boy just to go in for a second and get a Slurpee,
but those little bits of memories are what I need most right now.
What my other kids need too.
Bradley too.
And then we drove up the road to Kmart.
And the jeans were only $10.60 a pair!! SCORE!!
And everyone got some socks. Who doesn't love new socks?!?!
And chips too! YES!!
And we walked around gazing at Christmas things.
Looking at the trees and the lights.
And my children ran circles around me while I pushed the tiny man on oxygen.
And I hate it when my brain goes there,
but I started to think about this being my last Christmas with Bradley.
What if my fears come true?
This short journey with Bradley has been one of the hardest things I have ever had to endure.
And ironically it has taught me so much about perseverance.
I can keep going!!!
And I'm grateful for the inner strength that keeps on coming.
Perhaps it is the result of many prayers for us.
I do not know for sure.
But I know that there is strength, where I didn't know I had any.
I CAN do hard things!!
The last 16 months are proof of that.

Friday, November 16, 2012

The Hip Child

I don't know what my deal was today. I just felt like throwing crap away.
And I finally tackled my closet of baby things.
Slings I have not be able to use yet, because of Bradley's lack of trunk control.
And it made me think about something I had read while I was pregnant,
about a society that left a new mom alone until her child could sit on her hip.
Could you imagine?
I'd still be stuck in my house!!
 And a friend graciously took them off my hands. Thank you!!
They were just too heavy for me to deal with anymore.
And my nursing bras went in the trash too.
 Because it doesn't matter anymore that Bradley cannot nurse.
It doesn't matter!!
While we were in the hospital,
I had the awkward situation of dealing with a neurologist whose practice I was leaving.
Thank goodness his partner was covering the week for him.
And I was glad to see Dr. Mallar.
She was the neuro Bradley saw his very first stay in the PICU.
And she still has her black purse.
And she keeps a reflex hammer in it. lol!!
And she came into see us.
And I told her I was done with Halthore,
because he told me he would no longer treat Bradley without a diagnosis.
And she understood, what I was saying and explained what Halthore should have said.
She said that MRIs reveal abnormalities that cause seizures,
 like masses and other things in the brain.
She said that Bradley's MRIs have never shown any masses.
He has an unexplained seizure disorder.
And epilepsy is a sign he has a syndrome.
All of his conditions are consistent with a syndrome.
And I understood what she meant.
And I told her, that I have known there was something
wrong with his body since the first time I met him.
And she nodded and said, "See; you know..."
And she saw the holes in his legs from the IO and understood why we hadn't checked his levels.
She understood my dilemma.
And she also remembered how they struggled to get a line in him during his first stay in the PICU.
And I've decided I will stay with Dr. Mallar for now.
I need a doctor who will come see Bradley at Sunrise.
Because Sunrise is our second home.
It doesn't matter that he is not yet a hip child.
I still have hope he will be someday.
But for right now, it doesn't matter. 

Wednesday, November 7, 2012

The Ripples

When the seizures come all I can do is hold on and hope he comes out of it.
He's been doing a warning cry lately, so I know right before they come.
A distinctive cry. You would know it if you heard it again.
On my birthday he had two. We dosed him with his normal medication. He stopped.
Then on Monday he had 5 seizures before noon.
I took him to St. Rose, because I was in the neighborhood.
But Bradley never had a seizure the 6 hours we were in the ER there.
And the neurologist was consulted.
His level was low and the medication was upped.
And on the way home he had another one.

And the next morning (which was yesterday) he had 4 by noon.
He was taking the higher, prescribed amount.
And I called his neurologist after the 6th and said that I would take him in if I need to.
And the nuero said it takes a bit to adjust the level with the meds
and that if they didn't stop on the third day I should call.
He had the 7th and he went to bed.
But at 4am I was awakened by a heavy breathing full of secretions.
And I flipped on the light and pulled him into bed with me.
And he let out his warning call.
And I held him and cried.
And within 15 minutes he did it again.
And 15 minutes later, again.
And I asked Tom to give him a blessing.
And we walked into the ER at Sunrise and I told the nurse.
And she remembered us.
And she took his vitals and he suddenly had a fever of 104 F.
And she gave him a Tylenol and as she closed the diaper he let out the call again.
While he did it she hooked up the pulse ox and saw that his saturation was fine.
Then he went pale.
He continued coming in and out of it.
She took us back to a room.
And suddenly he called out again.
But this time he turned grey. And his sats dropped.
And she unhooked him from the wall and grabbed him off the bed
and said he was going to the trauma bay.
And he was surrounded by 6 nurses, a doctor and an RT.
And they started asking me questions.
And he was jerking and not breathing. His face was twitching.
They tried to get an IV and they could not.
So they placed an IO.
An IO goes through the bone and gives meds thru the bone marrow.
They use a drill to place it.
And I started to cry.
 And I knew he wasn't feeling it.
He wasn't feeling anything at the moment.
And they tried three times with the wrong sized drill.
And all I could do was cry and pity my small child who jerked on the gurney.
I said a few prayers.
I told God he could take him if he needed to. That I wouldn't be mad.
That I would feel some sort of relief if poor Bradley could have freedom from this cruel body.
But it finally stopped and I knew that meant his work has not ended.
And that he has more ripples to make on the hearts of many more.
And everything about him is memorable.
His name. His conditions. His hard veins. His dramatic entrances.
None of us will ever be the same.
What a sacrifice he has made so that all of us
can realize there is a God in heaven, who controls everything!
I'm hoping his sacrifice is not wasted.
That his impression is deep on each of our hearts and that the change he came to make, happens.

Thursday, November 1, 2012

Love, Bradley

I've been reading over Bradley's discharge papers
from his original hospitalization, shortly after birth.
There are so many things in those records that I understand way better now.
They had most of his problems figured out by the time he was 8 weeks old.
Most of his diagnosis' are still diagnosis' he has.
And it's a memory time line of his stay there.
Every date, every picc line, every intubation, every blood transfusion, every infection, every test.
CT scan, x-ray, swallow study.

When we were released the doctor told me Bradley was special.
At the time, I only knew that special meant retarded.
I was so beside myself that I had a retarded child.
Sorry if my use of the R word, offends you.
It is, what it is.
It is a real diagnosis.
Though his neurologist has not given him the diagnosis of mentally retarded yet,
I'm sure it's in our future.
I know he has mental retardation. That's why he has the issues he does.
And I don't think it is a damage thing, because if it was they would see it in MRIs.
I think his brain doesn't work like it should.
Perhaps a chemical that is lacking. That isn't released. I don't know. They don't know.
Just like how his thyroid doesn't work; his brain doesn't work.

 And I knew it when I first saw him. That he was different from my first three.
And I worried so much what people would think of him.
And that is another reason why I write this blog.
So that you will be on his side and love him as much as I do.
That you will get him, like I get him.
And when he yells out in public,
you will understand that he doesn't control his body like the rest of us.
And when he has a misshapen head and shakes it back and forth, you'll understand.
And that he won't make you uncomfortable to be around.
That you will feel like he is your brother too.
Because he is.

The RT came to show me how to use Bradley's vest machine today.
He said he had gotten his degree from U of U.
I told him we had just been up there, in September, seeing a geneticist.
I told him Bradley was undiagnosed and we were still trying to figure out what he had.
I could tell this was too much info for the RT by the look on his face.
I told him he was my 4th child and that none of my other's had had these problems.
And all of the suddenly, Jacob interrupted and said
"Yeah, and you get what you get and you don't throw a fit!"
And the RT said he didn't hear what Jacob had said and asked Jake to repeat himself.
Jacob said, louder this time,
And the RT and I started laughing.
I'm so glad Jacob understands that now.

It will make his life easier, for sure.