Don't Triple Book THIS Kid!!

 

 Bradley went out to the pulmonologist to get his synagis shot today.

He had the first time slot in the afternoon.

After he was weighed and measured, Cynthia hooked up the pulse ox and Bradley was in the 80s even with the oxygen going.

I remarked that that was strange and suddenly a seizure hit.

And his oxygen saturation kept going down, down, down.

60s, 50s, 40s. It just kept going down.

Cynthia told me to turn up the tank.

And then it was over.

And the number started rising again.

Cynthia and I started breathing again too.

And she remarked that if he had gone any lower she would have called a code.

She said she has only ever had one other kid do that to her.

And the child wasn't on oxygen at the time.

Sometimes I really like the oxygen :)

 

 

And the Pulmonologist triple books appointments.

And I could tell by when we arrived that we would be seen first for the afternoon.

And the nurse practitioner came in and said he heard Bradley had had a seizure with Cynthia.

And I said he had.

And he asked about why Bradley was on antibiotics.

And I told him that all the cultures had been clear; so was the x-ray they took.

And Ryan said that infections can be in more places than just the blood and urine.

I told him that we were getting the port on January 17th, 2013
 and I asked if he would recommend Bradley for it.

He said he would! It would be nice to know why he gets these sudden infections like he does.

Where it is coming from.

After 20 minutes of talking with Ryan, he said how late we were making him and that he had another 1:15 and 1:45 and a 2:00 already waiting for him.

He said the next appointment I make, I was to ask the nurse not to triple book Bradley.

That he is complicated and needs more time for appointments.

 

 

And then we started talking about a nurse.
The need that we will have for a nurse when the port is placed.

I told him the insurance was dragging their feet on an approval and Ryan said,

"How many hours do you want?"

I told him I only needed 8 hours a week.

Just one day a week, to go volunteer at the kids school or work.

And Ryan said, "I'll write you a letter!"

I said that would be great!!

He said he sees kids who require less care than Bradley who have nurses

and that he could get Bradley at least 20 hours a week.

I got really excited and told him I would LOVE that!!

 

 

And Bradley and I walked out of the appointment feeling so lifted.

That little bit of help would be amazing!!

I am so excited about getting help!!


I am really grateful for my special kid.

Special in so many ways!!

Thank you Bradley for coming to me and allowing me to be your helper.

You have made me special as well.

My purpose has been confirmed in you.

You are an amazing kid!!

I still believe

We had such a beautiful Christmas Eve tonight!! I love my kids!!

 

Charlotte was a sickie. And Bradley is limited on what he can do.

And so we only had two kids who could actually make gingerbread houses this year.

 

 Madeleine's house

 

 

 Jacob's house

 

 

I know, they are getting so old!!

And soon their lack of interest, in things like we did tonight, will over take them.

So I'm savoring the moment while I can. Even if it wasn't perfect!!

 

And when the activities were dying down, there was a sudden knock at the door.

And Madeleine and Jacob sprung to their feet to answer it.

And Dad told them to, "WAIT!!"

Lucky for the ding-dong-ditchers or else they would have been caught.

And on our doorstep was the largest red felt bag I have ever seen.

And a tiny note was attached from Santa, and it said:

 

Now when I read the note, I knew I had seen the handwriting before.

Although now, I cannot place who's it is.

And now that I'm sitting down to write this, and looking at the photo,

I'm sure this IS handwriting I've seen before because it IS SANTA'S!!

And the kids were all excited to see what was inside,

but as the note instructed I told them they had to wait!!

 

And after they were all bathed and we had read the Christmas Story,

and they were all snug in their beds,

Tom and I crept downstairs.

And that bag was full of the sweetest gifts for my children.

And I'm so thankful to whomever sent it.

And the things inside fit perfectly with the trip we have planned next week.

And I'd like to say thank you to where-ever the bag came from ;)
But part of me is feeling like Santa really is real!!

And that I'm just his helper in this whole Christmas thing.

And when I lack, I'm so made up for, in so many areas.

And we have been the recipients of so many miracles this year.

So thank you for letting me know you are real Santa.

Thank you!!

 

 

 

Dear Madeleine,

Thank you so much for being such a good girl this year!!
I really appreciate the help you have given to your Mother.
Your Mom asked me to please be good to you kids this year because of everything that you have been through with your baby brother. Please know, I deposited some money into your Dad’s account so that he might be able to afford the trip to Disneyland next week.
Don’t let him spend it on foolish things. Have fun!

Love,
Santa Clause

 

Dear Jacob,

I’m sorry you were sick this week. You have been such a help to your Mother this past year,
that she asked me to send a bit of money to help with the trip to Disneyland.
Tell your Dad not to spend the money on anything but the trip!!
Keep Bradley safe for me too. Enjoy the time you have together.
You are a special boy to have a brother like Bradley.

Love,
Santa Clause

(Jacob was eating his after dinner hot dog and his bun cracked, resulting in this pandemonium!!)

 

Dear Charlotte,

I’m sorry you’ve been sick this week. Hopefully you feel better in the morning.
Please know that I would have sent you tons of dolls, but I saw you already had so many, and your Mommy asked if you could go to Disneyland instead.
You are going to LOVE Disneyland!!
It is a magical place. Kiss Bradley for me and have fun!!

Love,
Santa Clause

 

Dear Bradley,

I send you my love from the North Pole. Because you were not getting toys this year,

I wasn’t able to personally deliver the gifts.

Instead I had a helper come by earlier in the night.

These games and things will keep everyone minds occupied on the road trip!!

Have fun at Disneyland. It is a most magical place.

You, sweet Bradley, are a teacher of your Brother and Sister's hearts.

Keep on doing what you do, and making me very proud!!

Love,
Santa Clause

 

No Access

Jacob has been SO sick!!

Seriously throwing up for two days.

And I was feeling exhausted yesterday morning.

Jacob is a really needy patient :)

And Bradley kept fussing yesterday too.

And I wondered if he was getting what Jacob has but that he couldn't throw up because of the fundo.

And if Jacob was lethargic, I could not imagine what would happen to Bradley.

 

And last night I was holding him on my bed and he was shivering!!

And I took off all his clothes and held him on my chest and covered us with a blanket.

And I could feel him stiffen and seize.

He had three seizures in 10 minutes or perhaps it was a 10 minute seizure.
And he was grey, almost blue, and we turned up the oxygen as high as we could.

And Tom called 911.

I had just given him a rectal Tylenol for the fever and chills.

And I told Tom I was scared to drive him down to Sunrise myself.

So they sent an ambulance.

And 8 EMTs came in with all their equipment.

And they looked at Bradley's modeled skin, and said he needed to go in.
He had a temperature of 103 and the EMT said he might have an infection.

And I told him I was afraid to drive him.

And they loaded me on the gurney holding Bradley in my arms and said they had to.

That stupid gurney hurts your legs.
And he said he was going to start an IV and I said "Good luck!"
And I told him about Bradley's access problems.
And he took a flash light and shone it through Bradley's hands and said he couldn't see ANY veins,
so he wouldn't try.

And I was facing the back of the ambulance but I knew every intersection we passed through.

And the EMT with me asked if I had lived in Vegas long. I told him 12 years.

But I told him I spend an unordinary amount of time at the hospital
and we are always always driving to Sunrise so I know EVERY intersection very well :)

 

 

And the nurse who came out to meet the ambulance made eye contact with me

 and said "YOU WERE JUST HERE!"
And the EMT said, "So you don't need me to brief you about this patient then?"

And she and I laughed and said no.

She said, "He was my patient last month; when we placed an IO."

And I nodded.

And they rolled us through the adult side and into peds.

And every nurse who we passed said hello.

And we were assigned one nurse and were put in the trauma bay so we had more room.

 

And the parade of nurses, trying to get a line, some blood, or something, started.

 

Some remembered us. Some did not.

And they tried every limb, every joint,

every possible place they have ever gotten an IV in anyone before.

And finally, 2 hours later, on the 10th attempt and the 10th nurse, they got one in!!

And they started fluids and tapped his arm to a board.

And a doctor came in and made eye contact with me and said he was a doctor from the PICU.

And then he said, "I remember you!"
And I said, "Me too."

 

 

And he told me he was going to try some artery draws.

And I told him that was fine.

And he was going for arteries in Bradley's groin.

And he kept pushing the needle in and pulling it out.

And he put a syringe on the other end of a butterfly needle

and had someone pull the plunger while he fished the needle.

He tried both arteries.

And nothing would flow out into the needle.

And he asked me where they normally get blood from,

and I told them they do not.

I told him it has been months since we've been able to get a draw.

And he asked if Bradley had been breastfed.

And I said "Yes; but only for 2 weeks."
And he said, "I see this all the time. Breastfed babies are the hardest to draw."
And I narrowed my eyes and said "REALLY!?!"

 

And he smiled and said, "No, I'm just kidding! Ha!"

And I had an ugly look on my face, and I said "I'M ABOUT TO KICK YOUR ASS!"
And the 10 people in the room stopped what they were doing and stared at me.

And the doctor was suddenly serious and said, "I'm sorry. I was joking."
And I said it wasn't funny!!

He was sitting there shoving a needled in and out of my baby and I didn't need jokes like that!!

Especially because I wanted to nurse him so badly.

And he aspirates. And I could not!!

And all of this bullshit is SO freakin' exahusting and I'm sick of it!!!

 



 

And as soon as I finished my rant, blood came flowing into the needle.

And they got their blood for their tests and their cultures.

And they turned off the lights and pulled the curtain and left me to hold

and kiss my baby who was knocked out from the ativan.

And I sat and kissed his free hand.

And I looked at his IV and his fingers were purple and his hand was white.

And I called the nurse.

And she came and removed the IV and said it was good I had noticed.

I spread out a sheet on another gurney that was in the room and I finally closed my eyes. 

 





 

And at 2am the nurse rushed in and said everything came back normal except he had an elevated white blood count and the cultures wouldn't be back for 48 hours.

And we were going home right after she gave him a shot of rocephin.

And I suddenly realized I needed a ride home.

And I called Tom and he hurried down and picked us up.
And I gratefully tucked my baby into his bed at 2am last night.

 

I'm 100% sure the port is a great idea now.

100%



Bruised Reeds

 

Sometimes when we look at our own trials,

we think we are suffering the most horrible thing anyone has ever had to suffer.

And then there are weeks, like right now, where we realize it's not so bad.

Having a baby with health problems is my own personal hell sometimes.

But this week I was put in my place to think about those poor Moms and Dads

of the children who were so suddenly taken from their lives.

 

 

I know tragedies do not have to be just tragedies.

We can always make them into something more positive.
Always.

And after the initial shock wears off, the sad, big, depressing, or overwhelming news
can become something beautiful if we put on our courage and do something more.

 

 

I feel the need to share this quote again with you.

It has been one that has taken me outside of my sorrow and helped me to understand the beautiful things the lord has for Bradley and me and everyone who feels sorrow in this life.

 

"Christ is building his kingdom with the broken things of earth.

People desire only the strong, successful, victorious, and unbroken things in life to build their kingdoms, but God is the God of the unsuccessful – the God of those who have failed.

Heaven is being filled with earth’s broken lives, and there is no “bruised reed” (Isa. 42:3) that Christ cannot take and restore to a glorious place of blessing and beauty.

He can take a life crushed by pain or sorrow and make it a harp whose music will be total praise.

He can lift earth's saddest failure up to heaven's glory."

J.R. Miller

 

None of us are immune from the sorrow of this world.

Eventually we all have to feel the pain of mortality.

 

 

May we do something more with our pain this Christmas season.

May we plead to our Father in heaven for his help.

And may his hands be around us as we reach out and help the others around us.

 

The Door Has Not Closed

 



 

Tonight we set up our Christmas tree.

Tom and I have used the same fake tree for 10 years

 but this year we decided it was time to try a real one!

We were out until 10pm last night trying to find a store that still had one that wasn't almost dead.

When we got home, Tom hastily set it up.

All day I looked at the crooked tree in my living room, hoping it wouldn't fall on anyone.

And tonight he came home and we attempted to fix it upright.

Took us almost 2 hours, but we finally got it straight, thanks to my mad skills. 

 

And the kids were itching to decorate it.

And we had time, so we pulled out all the ornaments. 

Ornaments are so sentimental for me.

 I have lots of picture ornaments too.

Tom and I in our engagement photo.

Every family picture ever taken.

And all of the kids when they turned one; all except for Bradley.

Last year, I told the kids I would put up a picture from Bradley's one year picture shoot.

But that picture shoot has never happened.

I've been secretly waiting for Bradley to hold up his head.

And he still cannot.

 

And as I looked at our finished tree,

I couldn't help but wonder where were all the pictures of Bradley.

Shame on me for holding him to a silly standard of shootablity!

And tomorrow I'm going to send these pictures of Bradley to CVS to be printed!!

 

 

On Monday Bradley had Physical Therapy.

His physical therapist has recently returned from maternity leave.

She had the prettiest little girl!

And as we were ending the session and I was buckling Bradley into his chair, she said,

"Mary, I just want you to know that Bradley could still walk someday!!"
And I told her I knew that. That I still had hope Bradley would do more.

 

And she said,

"I know you have hope. That is why you still come.

But I just want you to know that I had a little girl who had regressed.

 She was 6 and wouldn't do her exercises anymore.

She stopped walking after we had gotten her to.

 And I thought for sure her door had closed, that her time was up,

 and when I came back from Maternity leave, I learned she had started crawling again!!

 She's coming back from the regression!!"

 

She said,

"Sometimes I do have children who the door has closed for

and that is hard news to deliver to a parent,

but they are usually much older, like 15 and 16.

And I just want you to know, we don't know what Bradley can do.

It is possible Mary. I just want you to know that."

 

And I had chills up and down my arms and tears in my eyes

and I told her I still have hope that he will hold up his head and walk someday.

And she told me she does too.

 

 

 How can you look into his eyes and not see hope?

It is all around him.

I know there is a God in Heaven because of Bradley's eyes.

 

I am learning the door only closes if we close it.

Anything can change at any moment.

We do not control the universe.

Someone else does.

And no matter what, I still keep my door open trying to let the hope in.

 



The Books We Never Read

 

Long ago, when I just had Madeleine and Jacob, I collected books.

Lots of different kinds of children's books that could fill their minds with imaginations and stories.

 

Every birthday, that's what I would get them.

And my bookshelf grew.

And I loved to look at the books on the shelves, but I never read them to Madeleine and Jacob.

I didn't have time.

I had floors to clean and food to make.

And in the evenings, after baths, Tom would go into their rooms and read them the stories.

And Maddy and Jake loved it.

And Tom would sometimes fall asleep reading out of the books.

 

And Charlotte came and she filled my life with more work.

And I stopped watching TV when she stopped nursing.

And I didn't have time to sit and be with my kids.

I had stuff to do!!

 

And then came the boy who changed everything.

 

 

And there are nights I crawl into bed with my kids and I never want to leave.

And I smell their heads and tears well up in my eyes.

And I will read them any book they want; as many as they want.

Doesn't matter how many dishes are in the sink anymore.

And the time we spend together is so precious.

 

 

Once there was a sister in our relief society, who was having health struggles.

She had had stomach pains for a year.

And she had not been to the doctor for it.

And when she finally got in, they discovered she had stage 4 stomach cancer.

And that same week she had acquired her dead mother's things.

Among the things was a journal.

Her and her Mother had had a rocky relationship her entire life.
Her Mother had never told her she loved her.

And her Mother had passed a year earlier.

And she was hoping the journal would uncover her Mother's true feelings for her.

How much her Mother really did love her.

But instead, the pages were filled with her Mother complaining about her life.

How her children had ruined her.

 

And within a few weeks she was hospitalized.

And the presidency was contacted as her next of kin.

And the doctors told us we had no rights, except to know she was unconscious in the ICU.

And she had a bit of a recovery. And we went into see her and took some brothers in for a blessing.

And a few weeks later, I picked her up from the hospital and took her home to die.

But she didn't tell me that.

She didn't tell me the docs had released her, telling her they could do no more for her.

And she passed a few days after I had walked her to her door and helped her unlock the knob.

 

 

Dear Madeleine, Jacob, Charlotte, and Bradley,

 

I will never write a bad thing about any of you.

No matter what you do.

No matter how much I have to work for you.

You all are my whole heart.

And you each keep me going in the direction God intended.

And the work you require, is worth every minute.

I love each of you more than you will ever understand.

And the time I have with each of you are some of my most precious memories.

I wish you knew how many times I stop just to look at you.

And when each of you finally slip through my fingers and you really do leave me,

I will never fill the pits you left in my soul.

You are why I came to earth.

You are my everythings.

 

Love,

Mom

 

The God of Miracles

 

 Bradley's seizures changed this weekend. He has been having 5-7 a day for a month.

 And on Thanksgiving a second medicine was started to control the seizures.

And the seizures were getting hard enough that Bradley was starting to yell when they were over.

They were hard.

And he didn't sleep for 3 nights because of the seizures and the secretions.

And I got tired of it.

And we took him down to Sunrise yesterday to the ER to see what they think.

To adjust the medicine even.

 

 

 And Bradley's veins gave NO blood. And they tried 5 times and never got an IV placed either.

And they asked about an IO and we told them we had just had one.

And that an IO cannot be used to get blood, so we were not interested in another.

And we asked them to give him the loading dose thru the g-tube.

And the doctor said she would really like to see what his kidneys
are doing through a blood test because of all of the medicine he is on.

And we came back to our original problem;

NO BLOOD!

And the nurses and the doctor all started telling us to look into getting a port.

 

 

So they gave him more Keppra through his g-tube and sent him home.

And he slept all night.

And I'm still waiting to see what happens with the seizures. He's already had 4 or 5 today.

And I've been mulling it over in my brain today; wondering if a port would be okay.

And I said a prayer this morning, asking what I should do.

And I called the pediatrician and I told him that I need a way to test Bradley's blood.

And I asked him what he thought of ports.

And he said they are a big deal.
That they are placed through surgery.
There is a risk for infection.

That they can clog too.

But then I asked "So what should I do if I cannot get blood? Just wait until something bad happens?"

And Levin understood my point and said I should call the surgeon then.

And I got a referral and an appointment with the surgeon.

 

 

 And I realized this afternoon that Bradley's God is a God of Miracles.

Whatever happens with Bradley;

God will work a miracle through him.

And my God is not a God of fear;

and so I will not fear the port.

 



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.

 



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.

Epilepsy.

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. 

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 I KNEW IT WAS TIME TO TAKE HIM TO SUNRISE.

 

 

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.