21 Months Later

Photo's taken September 18, 2013

I've been trying to concentrate on planning our second annual Halloween party and all the fun things I want to do next month with Buggie. Truth is, it's all just a distraction. A distraction from the fact that, yet again, Liam will not be with us for any of the upcoming holidays. Planning things usually helps me keep my mind off of the sadness but it's hit me like a ton of bricks. I can feel depression grabbing my ankle and trying to pull me under the waters I've been trying so hard to keep my head above. I want to do all the things we weren't able to do when Liam was here because he was always too sick. I want them for my daughter. But I also want to do nothing but stay curled up in bead in sweat pants and hide from the world. Every day is a battle. Some days easier than other days. Still I put a smile on my face and continue on even when I don't feel that smile. It'll be two years in December. People will say things like "you need to move on" or "you need to get over it". What they don't understand is there's no moving on from the loss of a child. You carry it in your heart and in your soul until your reunited. There is no moving on. Losing a child is nothing like breaking up with a crappy boyfriend. You feel the loss of a child every day in everything you do. When your walking through the house and your no longer stepping on hotwheel and trains. When your doing the laundry and there clothes are no longer there to be washed. When your making dinner and there's one less person to feed. When you go somewhere fun like the fair and you and your husband turn to look at each other and say that you feel you've forgotten something but you haven't forgotten a thing. Your just missing a child. I wish I could hold my little lamb and tell him how much I love him. I wish I could smother him in kisses and play cars with him. It never goes away.

❤️💙Liam❤️💙

Child loss awareness month is October. Please help spread awareness. If you have an angel, feel free to share their name so we can pray for the when we light our candles on the 15th for the wave of light.

#childlossawareness #cdhawareness #pulmonaryembolism #littlelamb#alwaysmybaby

Letting Go Of The Anger

This post warrants a warning.

It starts out angry. There are statistics.

But I promise you it gets better. That you should keep reading.

Because the end if worth reading.

But it doesn't mean the same unless you read from the beginning.

 

Picture taken May 5, 2014

 

The movies lie.

TV lies.

They show scenes where someone needs CPR.

Most of the time they're able to save the patient.

It happens quickly,

and the patient is fine afterwards.

Life doesn't happen that way.

 

CPR isn't a cure all,

medical miracle.

The patient doesn't miraculously recover within seconds.

 

I find myself angry because I wanted TV to be true.

I wanted to wake up,

and these last almost 21 weeks to have been a nightmare.

That none of this ever happened.

Or that we were back in the hospital,

and they were able to save him.

But that can't happen.

Not unless I'm truly delusional.

And as everyone around me tells me,

I'm not imagining it.

 

Did you know:

Only 23.9% of adult who suffer cardiac arrest while in the hospital,

and receive cpr survive.

40% of children who suffer cardiac arrest while in the hospital,

and receive cpr survive.

Wikipedia says only 15-23% overall survive cardia arrest.

 

According to the US National Library of Medicine,

95% of patients who suffer from a pulmonary embolism,

and have cardiac arrest at the hospital do not survive.

 

They say CPR can be go on for 38 minutes,

and still show favorable brain function after being revived.

The odds of surviving severe brain damage drop 5% per minute.

Death can occur within 4-6 minutes.

 

When Liam was in the ER,

they did CPR for over an hour before stopping.

An hour.

When most doctors call it after 38 to maybe 45 minutes at the longest.

An hour.

Even though Liam would have suffered severe brain damage if he had come back.

They still tried.

Because he was a little boy.

Only 4 years old,

who had an entire life ahead of him to live.

So they tried even when logic told them to stop.

And after they realized he wasn't coming back,

they cried.

They mourned the little boy they couldn't save.

Their hearts broke for the parents whose lives turned upside down.

For the mother whose heart was shattered into a million pieces.

And for that,

there are no words to accurately describe how it felt,

to have a room and hallway full of strangers,

instantly bonded to you.

 

There are a few things I remember from that day.

 

One being that in the midst of all the chaos,

my brain picked out specific noises.

One specific one was when they called a code blue on another patient nearby.

I remember looking around and seeing 30 or more people who didn't move.

I looked at the case manager who was sitting beside me.

He told be there was an adult who coded but that no one wanted to leave.

No one could leave.

No one could stop watching and praying for my son.

It hadn't hit me until that moment how very serious the situation was.

I was being delusionally optimistic.

I thought in my heart and soul that my son would come out of this.

That he would be saved.

I was in shock.

That's when I started making phone calls and texting everyone.

Asking for prayers.

Selfishly asking some to come be by my side,

because I just couldn't go through this alone.

 

The doctor sticks out in my memory as well.

He had been racking his brain on what could possibly be causing this.

He took the time to try to explain to us as he went.

I remember how he looked at me with hope in his eyes,

and he explained how he was sure Liam had a blot clot.

He felt it was the only thing that could of acted as fast as it did.

The problem had been that Liam's veins were so "calcified",

so scarred up from years of IV's and blood draws,

that they weren't able to get an IV into him.

Therefore they couldn't administer they meds he needed to break up the clot.

My husband had been there at this time,

and without looking at each other,

we both told the doctor to do whatever he had to do to save him.

So they put in a bone IV.

They had never heard of a child receiving this adult medication they were going to try.

And they had never heard of it being administered through a bone IV,

but it was our last shot.

Liam's last chance at survival.

It was mere moments later when the doctor was forced to call it.

They had lost the pale weak heartbeat they had gotten.

Before the doctor called it,

he looked me in the eyes.

I could see he'd lost all hope that was there before.

He looked up at the clock and he called time.

He looked at me with a stricken

heartbroken look.

Told me he was sorry and walked closer to the door and stood there.

I was just repeating "no no no".

I watched at those who were working on him,

slowly back away.

How the lady who was doing CPR at that point,

climbed off the gurney,

eyes starring at the ground.

I remember hitting the wall and screaming.

Then running to his side.

I was crying telling him how sorry I was.

At one point I started to become numb.

I looked up and saw the doctor standing outside the room.

I slowly approached him.

I could tell he wasn't sure what to expect from me,

so he was expecting the worst.

I looked at him with tears in my eyes,

and a tear streaked face.

I thanked him for trying everything he could to save my son.

I hugged him.

Then I away,

back to my son.

 

I was told later on that the doctor had to leave the ER floor for a break.

I was told that the loss of Liam was too much for him.

He wasn't a doctor that cries.

ER doctors don't cry.

But he cried.

Several nurses needed breaks as well.

 

I started writing this to vent out all my anger.

To try and work through my pain.

As I wrote this I was able to connect with a greater feeling than angry.

I started feeling thankful.

Blessed even.

When most people would have given up,

this group of amazing people kept trying.

And when they didn't succeed,

they were heartbroken.

They felt the loss of Liam.

It was significant in their hearts.

So even as my son laid there dying,

he changed the world in many strangers eyes.

 

I know that doctor and those nurses will never forget my son.

And that is a gift.

One day I hope that I can share his life with them,

so that they can know his love and his smile,

and remember that more than his passing.

That he was a strong little boy who spent his life fighting,

and by the time he got to them,

he was just too tired to fight anymore.

And that has to be ok.

One day.

 

Picture taken May 2, 2014

 

 

 



April 26 2016

(April 26,2015)

 

I did something today that I haven't done since my son was alive.

I volunteered in his preschool class.

...

...

...

 

You may not recognize it,

but that was HUGE.

 

Every time I had to go in there,

I'd go in before the kids got there.

Then I would sneak out before they all arrived.

 

(April 26 2014)

 

I was scared.

I was nervous.

I was a wreck.

 

There are so many emotions.

 

I saw how far these kids have come.

The two little girls who wouldn't even talk,

and when they did it was Spanish,

they giggled,

laughed,

said hi,

and they talked a lot.

In perfect English.

 

Most the kids got really excited to see me.

Most of the hugged me.

One little boy wrapped his arms around me as I read to them.

He kept saying "I'm hugging you",

and refused to let go.

Several little girls latched onto my arms while in lines.

I had a kid attached to me almost the entire time.

And when they weren't attached,

they followed me around.

 

(April 26 2014)

 

I sat there and watched their morning routine.

I smiled.

I wanted to cry.

I could feel Liam there.

His square sat empty,

but I could feel him there,

participating in everything they were going.

 

I wanted him to be there.

I needed him to be there.

 

I thought maybe if this was a nightmare,

this would be the time I'd wake up.

When I'd look up and see him sitting there in class.

 

But it wasn't a nightmare.

I wasn't asleep.

This was just more reinforcement that this is my reality.

Not a reality I want,

but mine all the same.

 

I know it's not going to change.

I know I won't wake up from this.

I know it's not a nightmare.

But I can't help those little slivers of hope that work their way into my heart.

 

(April 26 2014)

 

I watched as these kids learned.

As they laughed.

As they showed us how far they've come.

I was proud of them.

And I had wondered how far Liam would have come,

if he was still here.

 

It's a parents worst nightmare.

Loosing a child.

Then trying to live without them.

A nightmare I've been so scared I might have to live for so very long now.

I've been scared since my first pregnancy when I miscarried.

I was terrified from the day Liam was born.

I let my guard down in his last 5 months.

I let myself believe he was out of the woods.

I let myself believe that the worst was over.

 

I always say "if I'd only  known".

There are so many things I would have done if I'd only known.

So many things I would have changed.

But I didn't get to know.

 

Why can't we choose our own journeys?

Why can't we go back and change things?

Why can't we have what our hearts truly want?

 

Because that's not how life works.

 

If only that sentence alone could change everything.

How we feel.

How we act.

 

 

 

 

 

 

 



Bright Light

 

Because life is confusing.

It's not perfect.

It's not pretty.

It's ugly and cruel.

 

Except for those little glimpses of light within the darkness.

 

Liam.

My bright light.

My happiness.

My reason.

 

And now it's all gone.

I'm left with only the memories of my bright light.

 

Both my children gave reason to my life in their own way.

 

 

 

Lanie was my rainbow baby after a miscarriage.

I had wanted to be a mom so badly,

and was devastated after the miscarriage.

Lanie brought back my happiness.

 

She was the little girl who wore bows,

smiled for the camera,

and wore dresses to play in the mud.

 

Her imagination trumped all others.

She was the little girl who made huge messes.

 

 

She changed me.

I loved (and still love) her with all my heart.

 

But there was still something missing.

My little boy.

My little lamb.

 

 

His birth wasn't ideal.

His health far from perfect.

But he was my perfect little boy.

 

My little boy who loved his cats.

And his dogs.

His cars.

Football.

NASCAR.

 

 

He was the missing piece.

The missing link.

And I needed him.

 

He was the little boy I always wanted.

And now he's gone.

 

The bond we shared is unlike any other.

Unlike the bond I share with my daughter.

I'd like to think that bond could never be broken.

Even though he's in Heaven.

 

Though his life brought us a lot of heartache.

A lot of stress.

He brought that bright light.

 

Even though he is in Heaven,

his light will still shine in my heart.

In my memories.

 

I know that right now I'm grieving,

but one day my heart will open up again.

Until then I grasp at the small moments of bright light that reach my broken heart.

The light that shines through my daughter,

and through the memories of my son.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

My Own Grief

Weeping may endure for a night,

but joy comes in the morning.

Psalm 30:5

 

 

 

Nights are the hardest.

I don't sleep well due to nightmares,

flashbacks,

and physical pain.

 

Nights are quiet and lonely.

That's when the tears come.

I can't stop them.

Though I wish I could some nights.

 

I miss my son more than anything.

 

This bible verse says that joy comes in the morning.

I wish it did.

I wish I could be full of joy

and happy for my family.

But I struggle everyday.

Every minute of every day.

 

I've yet to take a deep breath.

I've yet to smile where it wasn't at least partially forced.

I've yet to have one day where I don't cry.

That's my grief and I own it.

 

I feel so alone in it.

People avoid me.

No one wants to come around the sad lady who lost her son.

It's just too hard for them.

No one wants to come to the house where there are reminders a little boy used to live there.

Its just too sad for them.

 

Too hard for them.

Too sad for them.

 

The problem with being strong for other people,

is eventually they forget how much pain your really in.

They forget how much you need them.

They get lost in their own emotions,

their own grief over your lost son,

that your feelings no longer matter.

And when you can't be strong for the anymore,

because our grief is too much,

they act like your crazy.

Like you don't have a right to feel the way you do.

 

Eventually even the closest of people walk away from you.

Slowly they become more and more busy so you see them less.

They avoid your phone calls,

or talk less.

Even when you want to talk about anything but your grief.

 

Even when the last thing you want to talk about is your grief,

no ones there.

Because just talking to you remind them that you lost your son.

And that's too hard for them.

 

I tried not to be that grieving mother,

who didn't care how it effected others.

Every one's emotions mattered.

Everyone grieved in their own way.

And that was important.

I went out of my way to make sure people understood,

that I understood their grief,

and the importance of it.

 

That was really hard for me.

To care about someone elses pain when I hurt so horribly.

But it was important so I did it.

 

All those people that I comforted,

even though it was too hard for me,

where are they now when its too hard for them?

Not offering the same support for me.

 

Yea my grief lasts longer.

It'll probably never go away.

I lost my son.

The one person I spent 24-7 with.

The little boy I devoted 4 years 5 months and 1 day too.

The little boy I had to be a nurse for.

The little boy that I loved with every fiber of my being.

 

And now I grief alone.

And I don't know how.

 

Tuesday were the worst because it marked the one week anniversary.

Then I started spending the whole day trying to hold it all together,

because Tuesdays shouldn't hold so much power.

That's when Wednesday's became bad.

I spent so much energy keeping it together on Tuesdays,

that I had nothing left on Wednesdays.

I started breaking down emotionally.

It made teaching a kids bible study class difficult.

I realized that I wasn't emotionally ready to not spend Tuesday crying,

and lost in grief.

 

 

Blessed are those who mourn,

for they shall be comforted.

Matthew 5:4

 

 

I have a bad habit of not mourning.

Or of rushing through the grief.

I don't know how to handle it,

because it's not something I can fix.

I have to fix everything,

and I can't fix this.

 

Trying to help others deal with the loss of Liam was like me running away from my own grief.

I didn't want to feel it.

If I made the grief go away then maybe none of this ever really happened.

Maybe my son would still be here,

and this would all have been a nightmare.

 

But its real.

It happened.

And I can't change it.

 

That doesn't make this easier.

It doesn't make anything better.

 

Figuring out how to grieve has been hard.

No one to tell me what I should do.

No one to explain how this works.

 

I have no gravesite to take flowers too.

I couldn't do it.

I couldn't see my son in a casket.

And I couldn't visit him at a cemetery.

So we had him cremated,

and his ashes placed in a beautifully carved wooden "urn".

It depicts God with a grown sheep and holding a baby lamb.

It was perfect for our sweet little lamb.

But I can't even hardly look at it.

There's just a flood of emotions when I do that I can't process.

 

So I stare at his pictures instead.

I see his smiling face.

I remember the day the photo was taken.

I remember the joy.

 

That's all I have left.

 

And I think how cruel life is.

How a small innocent child was born with the odds always stacked against him.

How he never had a chance to live a long,

healthy life.

And I get angry.

And then I remember how he was never even supposed to live this long.

How he was never supposed to survive his first week of life,

let alone ever make it out of the NICU.

And I remember how blessed I felt to have him.

How blessed I was to be the mother of such a strong little boy,

who didn't care about the odds.

And then all the times his pediatrician praised me for how well I cared for him rang through my head.

"If it wasn't for you he wouldn't have lived as long as he did"

"If he's had any other mother he wouldn't have made it"

I always thought it couldn't be true.

Any mother would do what I'm doing.

Any mother wants to see their child healthy and happy.

I'm not dong anything different than any other mother.

 

And then it dawns on me.

I've surrounded myself with other CDH moms on social media.

I created a virtual world where flushing mediports,

and tube feeding was a normal thing.

 

So now what?

Where do I go from here?

Everything used to be planned out.

Almost every minute of every day (and night) came down to a schedule.

Meds.

Tube feeds.

Breathing treatments.

Home therapy.

Doctor appointments.

School pick up and drop off.

 

Now everything is being played by ear.

Things are planned.

There's no strategy for the day or days to come.

I just sit here alone every day until I pick Lanie up from school.

And then I sit here some more.

 

It shouldn't be so hard for me to process.

But the again I shouldn't of had  to say goodbye to my son.

 

 

But those who hope in the Lord will renew their strength.

They will soar on wings like eagles;

They will run and not grow weary,

they will walk and not be faint.

Isiah 40:31



10 Weeks Gone

 

10 weeks ago today my life changed forever.

10 weeks ago the world lost a beautiful soul.

10 weeks ago Heaven gained a perfect little angel.

Heaven became an even more perfect place that day.

And this world more dreary.

 

 

I will never stop loving him.

I will never stop thinking about him.

His life on earth may have ended,

but for some reason mine continues.

Even though I'm stuck.

Stuck grieving and unable to reach air.

But God left me here to continue on whatever path he has laid out for me.

If only I could find the strength and peace of mind to carry on without him.

 

 

I face each day knowing he wont be back.

Sometimes I awake calm and thinking I have it together.

Others days,

like today,

I wake with flash back of the day I lost my sweet little lamb.

But I know now that it's not bad days,

but bad moments.

 

 

I want to thank you all for your prayers and comments.

I haven't gotten back to anyone whose commented on here.

Truth is,

between blogging from my tablet and not able to see comments on there,

and being drowning in grief,

I haven't been feeling up to responding.

But thank you.

Please continue to pray for us.

 

 

 

Surprise Phone Call

          Despite going to bed with a headache last night,

waking up at 11:30p with a horrid migraine that had me in the fetal position in tears,

and waking up still with a headache,

I honestly thought today would be better.

I had gotten both kiddos off to school,

came home and was going to enjoy the peace and quiet.

Justin was at work so I had the house to myself,

and I was going to enjoy every minute of it,

and nurse my aching head.

I couldn't fall asleep so I took ibproffen.

Then I decided to make myself some food.

I ate in quiet and decided to do a bit of blogging.

After all...

I was proud of the post.

It was emotional and true.

Truth is important to me.

How can I give an accurate picture of what CDH does in our daily lives if I'm not truthful?

So again I spewed by guts out.

And for that I was proud.

(You can read the post here)

I decided to work on my book blog and marketing.

Then my phone rang.

(That's when the morning took a turn)

Surprise (yes genuine surprise)

It was Liam's school.

They noticed he was shaky.

His arms shook when they usually didn't.

His legs were shaky as well.

His equilibrium was off causing him to fall.

His face paler than normal and marbled.

And to top that cupcake off...

He was retching.

They knew this wasn't Liam.

He'd never behaved this way.

They called the LVN to the preschool rooms to have a look at him.

They called me right after to inform me.

As soon as she said Liam was acting weird I grabbed my keys.

I was out the door before she could finish telling me everything.

I told her I'd be there in 5 minutes.

When I got there I noticed all these traits as well.

Not just that but when I picked him up,

his entire body was trembling.

'Let the good times roll' I thought to myself.

One symptom on its own would be no biggie.

All these mixed together was another story.

Mix all those with what else he had exhibited at home and I knew something was up.

He had also slept 12-13 hours last night.

Liam never sleep that long.

He had diarrhea for the last 3 days and a killer diaper rash because of it.

This morning he was breathing heavier.

He seemed better after the treatment.

He was a bit quiet this morning,
and there was that whole conversation this morning.

I'm not sure what it all adds up too,

but he sees his pediatrician tomarrow.

Good day for a check up as well.

For now all I can do is comfort him.

He's cranky today and needs his mommy and cartoons.

Struggling With Over Stimulation

          I spent many nights worrying over Liam going to school. There were many reasons and fears running through my head:

He's too young.

I didn't get enough time at home with him.

What if he freaks out being left there.

What if he catches a virus.

What if his Gtube got pulled out.

What if he shut down due to over stimulation.

          Liam started coming home over stimulated last week. He was fine during class but as soon as I picked him up, he begun to shut down.

          Today was no exception. He saw me and at first wasn't ready to go. He wanted to finish singing the song about circles. Of course I wasn't in a hurry so I patiently waited for him to be ready. When he was he walked up to me then immediately shut down. His eyes glossed over and he got a blank stare on his face. At this point he refused to make eye contact with anyone. 

          He wouldn't say good bye. Wouldn't wave. Wouldn't acknowledge anyone or anything.

          He cried the whole way home this afternoon. Luckily we live 5 minutes from his school. Once home he wasn't much better. I had to resort to tactics I used when he was a baby. I laid him on my bed, pitch black, no lights, no noise. After 45 minutes in the dark and a bolus feed, he finally calmed down. 

          I hated to see him like this. At that moment I wanted to show his teachers what happens every day after school. How he shuts down. They had just stated how he was ready for a traditional preschool. He can't hardly handle two days a week with a day to between the two, there's no way he can handle five days a week. 

          Today one of his teachers told me that it got pretty loud during one of the activities they were doing and that Liam stuck his fingers in his ears and told them "too loud". I am very proud of him that he is able to communicate verbally and tell us how he feels and what he wants. He's come so far.

          I wish he could handle stimulation better. I wish I had a way to help him process better. Baby steps. Slow and steady wins the race. 

*note: there will be no pictures of the meltdowns and shutdowns caused by over stimulation. It's too heart breaking and personal to share. 

First Cuddles 7/28/11

3 years ago today was the first time I ever held Liam in my arms. I had waited so long and felt it would never be possible. But it was possible and exactly what I needed that night more than anything in the entire world. And once I held him I didn't want to put him back. But as exciting as it was to hold my dear sweet little 5 lb 18 day old baby the memory will forever be marred and tattooed on my brain forever. If you look at the top view of him you can see why but for those you don't see I'll elaborate. Liam wasn't ready to fly. They had just taken the feeding tube out and put him on cpap. He wasn't ready. And even though after a mere 5 min cuddling my son we had no choice put to put him back in his beg and call for respiratory. Liam wasn't getting adequate oxygen and was turning blue, slowly suffocating. A nightmare I still get to this day. They tried a different setting but before 24 hours on cpap he had to go back to the breathing tube. He just wasn't ready. A few shaky breathes later and I resigned myself to be ok with that. To accept it because there was not else I could do and I'd rather have him here with me than not. I realized then that fear can be just as strong as love. And just like love it can over take you completely even over ride love if your not careful. My love meant more than my fear. I let my love for him shine through every minute of everyday hoping that he would feel it and fight harder. I thank God everyday. 3 Yeats ago today and I still cherish every hug, kiss and cuddle as if it was the first. #cdh #cdhsucks #ihatecdh #survivor #love 

7/27/14 Selfie OP and a new Loose tooth

I was just laying here minding my own business with a pillow on my lap when Liam decided to climb up on the bed and settle himself between. My legs with his head on said pillow I say that's a selfie opportunity. 

Liam is doing very well after his mediport removal surgery. Today we've just been hanging around the house. Liam's playing with his cars, trains, books and playing his games. 

On an exciting note Lanie has her first loose tooth! Last night she was thrilled she had her first loose tooth. Today however she's singing in a whole new tone. 

Today she says her tooth is really sore and that it hurts. She's sticking to soft foods and chewing on the side of her mouth. She can't wait until it comes out so she won't hurt anymore. 

30th Hospital Stay

Yes it's official.

Liam has had his 30th hospital stay.

We've had a hell of a week!!

On the 17th Liam was taken to Children's hospital ER.

He was vomiting,

running a fever,

and required oxygen.

By the time we got to ER,

it's an hour drive,

Liam was breathing very heavy.

So heavy that it had the nurse scared.

She put an oxygen mask on him and pumped 13 litters into it.

I had had him on only 1 1/2 litters.

After quiet some time on 13 liters and an hour treatment

his breathing calmed down.

They took blood for labs.

Checking all the usual possibilities like mediport infection.

At the end of getting the blood out of the mediport,

it clogged up on them.

A blood clot got lodged and they were unable to get it out.

They called the doc and had to place an IV in his hand.

Thanks to all the time he's had to heal his veins,

getting an IV was a snap.

Through the IV they gave Liam fluids,

and some very powerful heavy duty antibiotics just in case it was a mediport infecion.

They used TPA to try an break up the clot.

It was very hard for them to get the TPA into the mediport.

The nurse pushed with all her might to get it in.

Two hours later it was still clogged.

By this time we already knew Liam was being admitted.

One for the clot in his mediport.

Two for his labs showing elevated white blood count.

Three not tolerating feeds.

Four his sudden oxygen requirement.

Good news was the xray of his lungs looked clear.

At 6am on the 18th we were still in ER.

Justin came to stay with Liam so I could rush home and work at 8:30am.

Later that morning the nurses in ER tried again to draw from his mediport.

They were again,

unsuccessful.

So they pushed TPA again.

My husband said that the nurse pushed even harder.

He said she pushed the TPA with all she had and was straining to get it in.

Then after a few hours they tried to draw blood.

hey got very very little. Just pulled enough into the needle line before stopping.

They were quick to announce that his mediport was now unclogged.

HMM....

Still because it was barely working they continued to use the IV in his hand.

Smart move on their part considering how this story ends.

They didn't start Liam's feeds back up until late afternoon on the 18th.

He was able to tolerate a full bolus of 4oz of Pediatric Compleate.

His 12 hour continuos bolus also went very well.

He continued to need oxygen and get breathing treatments around the clock.

At 11am on the 19th they took Liam completely off oxygen.

He tolerated room air perfectly at this point.

The "doctor" told us that if Liam tolerated room air for 24 hours,

then he would be allowed to go home.

Meanwhile his blood cultures came back negative.

Meaning no mediport infection.

(theres more to this just wait)

We still had no clue what was wrong with Liam.

On thursday the 19th at 7pm I arrived in Liam's hospital room.

I almost couldn't function while away from him knowing he was sick.

I felt horrible for not being by his side.

I even had a break down and cried about it.

I was so happy to be back at his side and caring for him.

He was happy to see me too.

Mommy gave him loads and loads of cuddles and anything he asked for.

I had took one look at Liam IV in his hand,

and explained to the nurse I felt his hand looked really puffy like it was blown.

She said that yes his hand was puffy but it was fine.

I told her i really felt it was gone.

She felt his hand and said it was fine.

I didn't want to make waves.

I knew that sometimes Liams hand did get pudgy when it was taped like that,

but I also knew that when it was red and puffy like that,

chanced were good it was blown.

I took her word though since she'd been watching him for two nights now.

During the night on the 19th/20th Liam started vomiting.

I honestly thought it was from coughing so much.

Because he started coughing before he vomited the nurses agreed.

We were even able to continue the feed.

He ended up doing this twice in the matter of 30 minutes.

The only major problem we saw was that he would start his coughing attacks,

about 30 minutes before his treatment was due.

Thankfully all the RT's were right on time.

On Friday the 20th the Doctors and "doctor" declared that Liam was good to go home.

When we finally got the discharge paper work it was around 5pm.

First to come out was the mediport.

They'd kept the mediport needle in just in case.

The nurse flushed it with hepran,

like we always do.

Then took off the dressing and out came the needle.

No hassle,

no pulling,

not like normal.

What came out with the needle?

All the hepran she had just pushed.

You know what a blown IV look like?

Well this looked just like that but bigger and on his chest.

I staired at it and then at her in question.

My brain tried to process what the situation was and what it all meant.

At the same time both the nurse and I mentally hit our heads on that metaphoric wall.

We started talking about how the heck this could happen.

After talking about everything from ER to then,

we were able to come to a conclusion we both agreed on.

The ER nurse was NOT supposed to push the TPA (or anything else) that hard.

Why?

Because it could cause the needle to dislodge.

And what had happened here?

The needle dislodged!!

Thankfully we didn't use it!

So then we called the "doctor" and notified him of what had happened.

He came in to talk to me so I asked what the side effects were.

I mean we just put in a whole months worth of TPA straight into Liam's chest cavity.

A medicine that's supposed to prevent the blood in the mediport from clotting.

What was his responce?

That the body would absorb it in time and he would be fine.

No side effects.

Really??

The charge nurse came in later to let me know this happened once to an adult patients mediport she was working with and his entire left side swelled up pretty bad and was red.

But yea the "doctor" said no side effects.

Thankfully there are nurses there who care and let me know what the possibilities were.

Seriously we've had some amazing nurses in this journey.

Ones I would have been lost without.

Finally it was time for the discharge instructions.

The nurse and I were going through the paper work,

and we were both confounded and pissed at what we were reading.

The "doctor" wrote a bunch of symptoms and diagnosis that Liam never had.

He wrote that Liam was on meds he was never on.

He also stated that Liam had a broviac instead of a mediport.

BIG DIFFERENCE!!!

The nurse apologozed profusely for this.

That's when I learned that the "doctor"

was actually a second year med student.

REALLY???

I was fumming pissed.

No wonder he seemed like he knew nothing and had NO answers for us!

Instead of waiting around for notes at this point,

I made noted on her copy of the paperwork before signing it.

She made several notes of her own.

She said this guy was on her list because he was always screwing up.

Putting our frustration and anger aside,

it was time to get the IV out of Liam's hand.

Guess what we find?

His IV had blown as well!!

I told the nurse how I had thought it was the night before,

but when I brought it up to the night nurse she insured me it was fine.

At this point our poor nurse was at her wits end.

She explained that she was going to talk to the head doctor of that group,

explain what had happened with the other "doctor",

as well as make a incident report.

She said it needed to be documented in case Liam ended up having symptoms from it.

She had our back all the way.

After I dressed Liam and we grabbed all our stuff,

we left.

As we walked through past the nurse's station we found our nurse on the phone.

Sure enough she was already making the complaints and incident reports.

I swear this lady had a heart of gold.

I can only hope that if and when Liam has  to go back,

that we get her again.

I truely love her for honestly caring about our little lamb.

What's going on now?

Well Liam hasn't gotten better.

In fact since he's been discharged he's gotten worse.

The next day (21st)

Liam started running fevers.

101.6 on saturday morning.

I almost rushed him back that very minute.

In fact he was looking so bad on saturday morning that I called into work and started packing our bags.

Justin talked to me and convinced me to calm down and take a few steps before rushing off.

We gave him motrin and a cool shower and he cooled off.

He was also breathing fast and coughing so we gave an early treatment.

At this point we were doing albuterol very 4 hours.

His pulmacurt and atravant in the morning and night.

At nights he was vomiting his formula feeds.

We had to stop them as soon as that happened.

It wasn't just some vomit but full on perjectile.

On sunday we was still running fevers.

I went and bought gatoraide to run through his tube to keep him hydrated.

We also had to start using atrovant every 4 hours.

Liam was getting a treatment every 2 hours at this point.

He was also needing oxygen at night.

Sunday night/ Monday morning ay 1am he started vomiting without even coughing.

Again it was perjectile.

I stopped the formula and started gatoraide.

During the late mornings and into the evening Liam seemed fine.

If it wasn't for all the coughing you'd never know he was sick.

Monday I had to call into work again.

Liam had to go see our pediatrician.

It was mandatory.

Liam's cough and the way he behaved screamed it was time.

Our pediatrician gave him a combined albuterol/atrovant treatment so he could hear the before and after in Liam's lungs.

Thankfully he said the wheeze pretty much went away,

and it didn't sound like pnuemonia.

So we went home with a different breathing treatment plan.

Albuterol every 3 hours.

Atrovant every 6 hours

This has helped but Liam is still so congested.

We also started gatoraide boluses in the daytime.

This is to ensure he stays hydrated.

And our pedi is ok with oxygen use at night.

He said whatever helps Liam stay home longer.

Today Liam has thrown up twice on his boluses.

He barely tolerates 2 oz when his normal is 4.

This had be extremely worried.

I called home every break I had to check on him.

Every time Liam wasn't running a fever,

refused to eat anything,

and was running amok like normal.

Still the very low calorie intake was so stressful.

Our pedi,

who is amazing and the best EVER,

made a house call tonight to check on him.

Liam's lungs have a wheeze here and there,

but are moving air well.

He said to keep doing what we're doing.

Lower the night feed rate so he keeps the formula down.

That way he gets calories in him.

He said he's ok with oxygen usage at night.

He feels that Liam can still stay home at this point.

Thank Heavens because I was so worried.

We are to text him tomarrow letting him know how Liam's doing.

Yes text him,

as in his personal cell phone.

Thats how awesome our pediatrician is.

In other good news,

the Pediatric Compleate was approved my insurance and will be delivered tomarrow.

We were first told it would not be covered,

because it's made by nestle.

Well that worker was thankfully wrong.

Our GI gave us a case of it a few weeks ago to try.

The transition from Elecare JR to Compleate was seemless.

Liam has never tollerated something so quickly and seemlessly before.

Compleate isn't an actual formula because it is not milk based.

It's actual food blended up.

When I was blending foods and pushing them through Liams gtube

we saw an immediate response.

He was more energetic.

He stopped retching and vomiting,

And he started packing on the weight faster than ever.

That says alot because Liam seldomly gains weight.

When we tried a whole case of Compleate,

I saw an immediate response.

No retching or vomiting.

More energetic.

And from one day to the next I could see weight gain in his belly.

Justin thought I was joking and didn't believe me.

But one look at Liam's belly and he was shocked.

There was a belly begining.

This was exciting.

So when we were told monday that it wouldn't be covered,

we were both so very frustrated and angry.

Compleate had given us hope,

and that hope had been ripped from out eyes.

God must have heard our prayers and given us a miracle.

We are so excited that his Compleate will be here tomarrow.

We hope that he tollerates it better right now than the formula.

I say that just because he is sick and not tolerating much of anything.

Already in this bought of sickness,

Liam has lost weight.

You can see it by just looking at him.

No need for scales with him because its very visable.

I feel so blessed that this prayer has been answered.

And if insurance hadn't covered it,

I have a very dear friend with a CDH baby of her own who is on Compleate.

She offered to supply us with some knowing how hard it is for these kids to gain weight.

I absolutely love that I have grown so close to a few mom's with CDHers,

and that we can help each other out when we can.

In other news:

Lanie has a bad ear infection.

It just started hurting last night.

She came to me crying in pain so I took her to urgent care.

The doctor there was shocked it had only started hurting that day.

She said it looked like it had been brewing for some time now.

I'm really glad we caught it before it became even worse.

Lanie hasn't complaint very much at all over it.

I fear that it could be because she knows we're under alot of stress as it is that she doesn't want to cause us more.

I sat her down and explained to her that she never should fear telling us anything.

That is shes hurting she needs to let us know so we can help.

I told her shes too young to worry.

She promised me that she hadn't been keeping it from us.

So then I started thinking that because she used to have ear infections chronically,

that she built up a tollerance to the pain.

Kind of like I built of a tollerance to my back pain.

I've only gotten worse.

Physical Therapy did strengthen my core like we wanted it too.

Only it didn't solve the problem.

In fact it might have made it worse in some ways.

I still have the pins and needles pain all over.

My upper spine cracks alot and stays sore.

My whole body stays sore for the pins and needles feeling.

The longer I'm on my feet the number and worse they get.

I missed last fridays appointment because I was at the hospital with Liam,

so I can't get into him again until July 7th.

He wants me to take meds to detox the aspertame poisoning he feels never went away.

He's also referring me to a nuerologist.

I have an MRI tomarrow.

Hoping we get some news from that very soon.

I just need to know what the problem is so that I can fix it asap.

The pain had climbed to a new level that my body is having a hard time getting used to so I can block it out.

I might have 1 decent day out of 10.

Today was my last PT appointment.

They did their last evaluation.

They feel I've outgrown what they can do for me and she also felt really bad she couldn't help make the pain go away.

I'm actually sad to see it stop.

I really liked them and think they were doing great with me.

But all good things must come to an end.

Now I need to hold myself accountable and get to the gym.

I know what I have to do to continue to strengthen my muscles and need to stick with it.

Now to reward those whose read the whole blog post: