Preschool Graduation

Graduation. It's usually a time of happiness, excitement. The feeling of completion before you hit your next stage in life. And for some maybe some sadness mixed in but it's still a happy time. You cry, you laugh, you take a deep breath and reflect on your (or your child's accomplishments. It's not just college students and high school students that reach this plateau. Preschoolers (and kindergarteners) get to celebrate. 

Today Liam's preschool class graduated. They all dressed up, wore hair bows and bow ties. They walked across the stage with confidence and pride that rivaled college grads. They smile as they received their personalized metals. They sang their songs, took hundreds of pictures, and ate cake. It was a great day for them. 

As they walked across that stage I started shaking. Then I was hit with emotions. My son wasn't among the 24 boys and girl crossing the stage. He wasn't sitting in his chair singing and smiling. My son didn't get to walk up, shake MRS H's hand and receive his metal. 

My eyes filled up and the tears threatened to escape. For a moment all I could think about was the injustice that my son wasn't here on what should have big a BIG day for him. It wasn't fair. This isn't how it's supposed to be. I was supposed to watch along with all the happy parents as their children stepped on stage. In stead in his place was a stuffed minion. 

Then the dreaded moment hit. I didn't know for sure it was going to happen but I had a feeling it would. MRS H made a speech. Saying every morning the kids put their hands over their heart, take a deep breath and think of Liam. I couldn't hold back the tears. Then she called me up and presented me with Liam's certificate, metal and pictures. I couldn't stop. I walked up their crying. 

I imagine it felt similar to when a fallen soldiers family received a metal of honor or the flag. Liam's metal was unlike their other (red, white and blue striped lanyards). I guess in a way he is a fallen soldier. He was a warrior after all in his own right. He spent his entire life fighting. His certificate was special as well. Instead of a graduation certificate they made his an outstanding participation certificate with a seal and everything. Again it makes my heart feel like it's been ripped out because this isn't how it's supposed to be. 

I had several parents walk up and hug me. They thanked me. For what I'm not sure. Maybe for working with their babies. For always being willing to help. I was also presented with a certificate stating that I volunteered approximately 88 hours this year. The most volunteered hours they had. 

After the tears, there were smiles and laughter. And lots of pictures. I watched all these kids excited about graduation and moving onto kindergarten. I watched as they ran around and laughed and posed. I watched their happiness and soaked in as much as I could. I used it to give me strength to get through the next few hours. It was important that they see me happy for them and I didn't want to give them anything less. 

I smiled and took pictures of happy parents with their babies. Memories I'm sure that will last forever. Inside I wished for that. Sad that I couldn't too be truely happy without the tenge of sadness and misery. 

Lanie and her friend Miley joined us and passed out flyers to the parents attending graduation. I was glad to have Lanies support and to have her there to pick up the pieces of receiving Liam's metal when I couldn't. 

When Lanie and I got home, we decided to release a balloon in Liam's honor. Lanie said a few words then set it free. We watched until we couldn't see it anymore. And I cried. 

For you little lamb. I hope this reacted you and you feel my love. I miss you so much. Everyday is a struggle but I keep my promise always to try and be "Liam Strong" 

Be Happy

Do you remember when you were youger? Before marriage, kids, girls scouts and PTA? Do you remember what you wanted in life back then? What were your aspirations? What were your dreams?

Now after years of diaper changes, fevers, teething, colic, being covered in just about everything that you put in or comes out of your child, car pools, meetings, organized events and so on, do you feel you reached those aspirations and dreams? Or have your life goals changed?

Are you where you thought you'd be 10 years later?

I thought by now I'd have a really good job and would be successful at that. I thought I'd be married and have 2 healthy kids and own a house. 

Sure I've had several really good jobs (kitchen designer, tax professional) but for some reason or another that chapter in my life closed. One because I was young and didn't have the back bone to fight for my dream job. The other because my son was born with CDH and he needed me. 

I'm married and I have my 2 kids. One isn't the ideal healthy but much healthier none the less. And I don't own a house. 

Some might look at my life and call it a failure. Would you call your life a failure? If you would, I'd like you to take another look and rethink that. 

You may not have the job you always wanted. Your life may not have went the way you dreamt. But it's not because your failed. You can't fail life as long as your living it. 

I like to think of our lives as chapters in a book. Every chapter must end before another can end. 

Are you happy? Do you have something to smile about? A friend to lean on? If not, then do something about it. 

I want you to ask yourself, what makes you happy? Sometimes the little things make the difference. Does a nice cup of coffee set your day on the right path? Does getting a new book put a smile on your face? What about that selfie you just took and posted on Instagram? 

Find something that makes you feel happy. Surround yourself with happiness. Even something simple. 

You have a bracelet that makes your grin every time you see it? Wear it! 

Is there a song that just makes you want to sing along and dance every time you hear it? Make it your ringtone. 

Inspiration for happiness can be found anywhere and everywhere. Just open your eyes and latch onto something. Because what's the point of life if your not happy living it? So BE HAPPY!!

Finding My New Path

When my world came crashing down on me I felt broken.

I was so broken I didn't think I could be fixed.

The world I once knew no longer existed and I didn't know how to handle that.

The family I once had wasn't the same.

I went from being surrounded by those I loved,

to being surrounded by strangers I knew nothing about,

in a city I knew no one.

A city I had never been too.

I found myself in a world I didn't recognize.

with a sick son I could do nothing for.

I felt alone.

Completely and utterly alone.

Broken.

Shattered.

Unrecognizable.

Unfixable.

I spend the last 3 1/2 years riding this wave.

Trying to find a way to make it work,

in a world of the complete opposite of anything I had once thought to be normal.

My new normal consisted of hospitals,

Doctors.

Meds.

Breathing treatments.

Surgeries.

Schedules.

I lost myself.

And now after 3 1/2 years I am trying to find myself once again.

Who I am.

What I like.

What I don't like.

I'm not sure yet who I am,

It's a confusing process.

A long hard process full of ups and downs.

When you've been living in a cave for so long,

it can be scary to see the sky and the sun.

Last year was the closest year we've had to "normal".

I've been finding myself lost in the mix.

I know I need to find my path again.

I can't continue to be this way.

So I've decided to jump in with both feet.

Try something new,

and if it doesn't work then try again.

This time I jumped feet first into PTA.

I jumped to far that I landed myself on the board of executives.

I guess it's fitting.

For the moment anyway.

I need to connect with people.

Remember what it's like to socialize.

It's scary.

I'm way out of my comfort zone.

Maybe that's a good thing considering my current comfort zone consist of sweats,

treatments,

feeds,

and alone at home with only the kids.

Actual interaction with other adults that weren't medical professionals was far and few between.

I know that this new journey will take a lot of work.

Patience.

Will power.

I just want to find a new way in this world.

One with less medical needs.

One with more smiles.

Maybe even find a friend or two.

Routine

My biggest problem of today is running out of closet space in this tiny closet and still having more I'd rather hang than fold. Thank you God for the simple things, for making every day better than the last and giving more days. 

There was a time when things were so bad when I had to constantly worry about Liam's health, his lungs, tons of appointments and had to keep a bag packed and ready to go for a hospital stay because we never knew when the time would come when we'd have to rush off to Children's. 

A time when I had to have an entire weeks worth of "spare" clothes that stayed packed 24-7. When I had to have extra toothbrushes and toiletries. A time when all electronic I would use while at the hospital would be charged frequently, and placed back into my backpack as soon as I was done using them along with their power cords because staying in touch with Family and friends while there kept be tethered to real life. Got me through hard lonely times. 

Truth be told, I have a toiletry bag in the bathroom ready to go. My suitcase never out of reach and I know my closet and dresser better than the back of my hand. I may not have to keep that bag packed and ready to go anymore, but I know that without a doubt that I can pack enough for Liam and I in less than 15 min and be out that door. Yes, I am that good. 

But it's not about being that good. It's about the years of doing this that I just can't stray from. It's still just too new to have just long periods of time between emergency hospital runs.

I'm a creature of habit. Habit is what gets me out of bed in the morning like a robot. When a wrench is thrown Into my habits, I have...complications. I always thought I was a go with the wind kinda person. I was at one point. I thrived on spontaneous actions. That was all before Liam. I'm not spontaneous anymore. I fear doing something spontaneous will lead to forgetting something vitally important. Forgetting something vitally important will lead to serious consequences. 

I may not keep my bag packed anymore, but if you look hard at my stuff, you can pinpoint exactly where it is I will rushedly grab things in the case of an emergency hospital run. 

My days are filled with meds, tube feeds, fighting a toddler to eat more, laughs, silliness, and what some would call boredom. But it's my routine. This is what I do and who I am now. 

So if my biggest problem of the day, after all I've been through is not enough closet space...I'll take it and run. 

Finding Strength

I won't lie.

Life is hard.

If your life is easy,

then your probably doing something wrong,

or are in denial.

If your life really is truly easy,

then millions of people envy you.

Nothing about my life has been easy.

NOTHING.

From the day I was born I had to fight.

I was born tiny at barely over 4 pounds.

I fought to survive.

Ever since I've been fighting.

That's what I do.

It's who I am.

Growing up was never easy.

My marriage isn't easy.

Having kids isn't easy.

Having a child with so many medical needs,

sure isn't easy.

And having Fibermyalgia is far from easy.

That's life.

Just because I fight everyday for some happiness,

doesn't mean I'm strong.

Every time I find the strength to overcome one issue,

I'm forced to yet again find more strength to overcome more.

Like I said,

life is hard.

I don't spend everyday complaining.

I spend everyday trying to overcome.

Complaining is a useless act.

It only makes you more miserable,

and makes those around you miserable.

When you complain all the time,

people don't want to be around you.

But what do you do when you plaster a smile on your face,

and pretend everything is fine,

and still no one is there to support you?

You find the strength to get on with life without them!

Before Liam was born,

I had friends.

Not very many but they were there.

We'd get together,

go shopping,

out to lunch,

or just talk.

After Liam was born,

no one wanted to be around.

Instead of being there to support me while I sat there watching my baby fight for life,

they deserted me.

Not one person reached out to me just to say they were there,

No one asked how he was doing.

How I was doing,

No one cared how I was doing.

Total strangers cared,

but my so called friends didn't.

3 years of battles,

30 hospitalizations,

countless surgeries,

and where were those friends when I needed them the most?

Not by my side offering even a shoulder to cry on.

How many times did we have visitors in the hospital from someone other than family and our pastor?

Once.

How many times did family even come visit?

If you don't count my own husband and daughter,

you get 3 times.

But in those 3 years do you know what I heard many times?

"You shouldn't post that, it's to hard to see"

"I can't be around, it's just too hard for me to see"

Did they every take into consideration how hard it was for me?

This was my son fighting for life.

I was by his side day in and day out.

So because it was my own son going through this,

it was easy for me?

No.

No it wasn't.

Saying life was very hard during these times is an understatement.

But guess what?

I survived.

Do you know what that means?

It means I survived the worst times of my life alone without them.

It means that now that things are better,

that I have no room or time for those who didn't care for us when we needed them.

There's no room in our lives for people who don't care for us,

or for people that bring out the worst in us.

They will only bring us down.

Yes I forgive them,

those who decided that being there for me was too hard for them.

But I won't make that mistake again,

and depend on them.

People are unreliable.

People are selfish.

I found strength to get through the last 3 years 3 months,

without the support of "friends".

I will find the strength to get through this Fibermyalgia journey alone as well.

Because if there is one thing I learnt in life,

it's that people will always walk away when you need them the most.

Think that's pessimistic?

It's not.

It's being truthful.

It's being honest.

It's not setting myself up for more hurt.

Life isn't cookie cutter perfect.

No one is perfect.

You have to expect the worst,

but hope for the best.

This life is like scaling a mountain,

you either find the strength to push on,

or you fall.

Halloween Magic

What happened to that mom?

That mom who decorated every holiday no matter how big or small it was?

This year she is gone.

Hiding some place refusing to come out.

I don't have the energy this year.

I so wish I did.

I want to get past this chronic fatigue and chronic pain,

hoping that decorating will make me feel better.

Is it even possible to feel better?

Is it even possible to push past this?

I have no clue.

I wish I could bring back that mom who got overzealous about all the holidays.

That mom that no matter what decorated.

That mom who always baked for every occasion.

That mom who was just so desperate for something normal that she made it happen.

What's changed?

Yes I have fibermyalgia,

but I know I've had it for some time.

It only got worse coming up on a year ago.

I want to dig through the decoration.

I want to scale the counters to hang things from the ceiling.

I want to stand on my tippie toes on the top of the step stool to hand fake spider webs.

I want to hang black gossimer in the windows,

black paper owls on the door,

glowing eyes in random places.

I want to stand back at the edge of the yard and admire my work,

knowing that all the kids in the neighborhood will point and laugh,

and be excited about Halloween.

Halloween is my favorite holiday.

You get to dress up and become anyone you want.

You get to scare and be scared just for laughs.

And most of all,

my husband proposed to me on Halloween.

At 2am.

When he didn't even know I LOVED Halloween.

It was meant to be right?!

And even though things have been difficult since Liam was born sick,

I still love him with all my heart.

Even when at times I feel it would be easier to leave him,

I still love him.

Love isn't easy.

Your supposed to work for it,

make it work.

Because otherwise it isn't true love.

So maybe that's why I am so saddened by the fact that I haven't decorated.

In my own way,

it's me celebrating the day he realized he loved me ad couldn't loose me.

Halloween is magical.

It's when everything we don't believe or shouldn't believe in comes alive.

It's the only time of the year where the taboo is not taboo.

Princesses find their princes.

Or happiness in HUGE bags of candy.

Ghost and witches fly around from door to door saying the magical words that get them candy,

trick or treat.

Everyone can be who they want to be.

For once they can have hope and see the "magic" of this world.

It's great fun seeing all the costumes.

Watching the kids fill their bags with candy then later gorge on it.

Fun Halloween games,

bobbing for apples,

haunted hay rides,

haunted forest.

Hogwarts come to life,

whole blocks turned into pirate ships.

Halloween is about discovering the magic.

I want to rekindle old memories.

I want to show my kids that there is magic out there.

I want to see their faces light up as the house transforms from just an ordinary home,

to something greater.

So can I get my body to cooperate?

Can I work past this?

I honestly don't know.

What I do know is that I want too.

Instead of sitting here feeling sorry for myself,

I'm going to get up and at least try.

I shouldn't give up before at least trying.

My kids need to know that even if you fail,

it's ok because at least you tried.

You don't give up before the game even starts.

The Timehop Perspective

It's hard not to campare today to the past when timehop lays it all out there for you to see. As time passes you tend to forget things...or in our case, we wish we could forget things. Timehop is just another tool I use to remember how bad things used to be so that I can be greatful for what today brings. I calm it the timehop perspective because it changes your outlook. Take for instance:

This was Liam 3 years ago today. I was trying to wake him up to get his feeding in. He was still eating all by mouth here but he was eating less and less. We had already gotten the news that he was failure to thrive and would be getting a feeding tube. I was still fighting and killing myself to get these feeds in him to prove that he could thrive and that we didn't need a tube. No matter how hard I tried to wake him up he just wouldn't. The few times he did wake up he ate just a tiny amount before falling back asleep. 

Tube feeds make me so angry and frustrated, at times I want to throw his pump through a window or wanna scream because Liam refuses to eat. Looking at this picture reminded me of how hard it was to get him to eat as a baby. How he literally could not stay awake to finish 1/4th of the bottle. He slept all the time. He started loosing weight. It got scary. If it hadn't been for the feeding tube, Liam would have wasted away until one day his body wouldn't have been able to fight anymore. I'm just gonna say it how I'm thinking it, "damn am I greatful for that feeding tube". Yes. It's true. My son had survived CDH, there was no way I could have let him loose the battle just because he couldn't eat enough. 

I've met many people who look down on me because I "let" my son get a feeding tube. People who blame me, saying I didn't try hard enough. You know what I have to say to those kind of people? You obviously haven't walked in my shoes. You obviously weren't there through my alarm going off every hour so I could spent 30 minutes doing everything I could to wake Liam up to feed him. You obviously weren't there to see how I hardly ever slept because Liam's needs were bigger than mine. You didn't sit there holding your baby crying because you knew if he didn't eat it would mean very bad things. You weren't there when I begged and pleaded with the doctors to give him more time to prove he can do it. Ypu weren't there when they explained that there wasn't anymore time left and that if they didn't do it soon things would get ugly for Liam. You weren't the one that felt defeated and like a failure. Nope you weren't there so don't judge me, my family or tell me how the situation is supposed to be handled. 

My unsolicited advice to you is to think before you judge the situation.

I love my son and have always had his best interest at heart. I would never do anything that would cause him harm. I only want his quality of like to be better. He doesn't deserve to be on quarantine in fall/winter/spring. He deserves happiness and to experience life. He deserves trips to Disneyland I'll probably never be able to afford, to be able to walk through a crowded mall without getting sick, to go to the theaters and watch movies. He deserves long trips to the beach to laugh and feel the sand in his toes and eat fish and chips. 

Liam deserves to be a kid and not a patient. As each year passes, I see him getting closer and closer to this goal. It's amazing and wonderful. I may not be able to take him to Disneyland but I can shower him with my constant, unwavering love for him. 

If there's one thing I learned on this journey, it's that love is important. You must surround yourself with love and those who love you. That's what makes life special and amazing. That's a life worth living and we've got plenty of love. 

A Royal Flush

The girl/woman in this picture seems so happy. She seems so carefree. Sure there's circles under her eyes from lack of sleep but she's happy. She's got it all figured out and her life is getting better after years of hell. 

Little did she know within a few short weeks of this pic being taken that her life would get worse again. That her health would decline and people would start thinking she was a hypochondriac and a liar. 

The happy girl is/was me. Happy days aren't as often. I don't know if the worst part is the chronic pain or he fact that no one believes me. Even with a medical diagnosis no one believes. 

"It's all in your head"

"Your making it up"

"Are you addicted to pain meds?"

No it's not all in my head but more like all in the nerves. The nerves in my body are over active causing my brain to register it as pain. 

I'm not making it up, although I wish I was because then I could shut it off. It's hurtful to be riddled in pain and have someone not believe you. It's the reason I've been in pain for years without doing anything about it. The support system I need just isn't there. Which is all fine and dandy because when I am in pain I'd rather be left alone. 

When I go into urgent care, emergency room or to see a new doctor I feel like they think I'm just seeking meds. In reality I'd rather not have to take them. They're harsh on the body and make me sick to my stomach. I hate how they make me feel foggy. My last doctor was great and listened to me. I explained to him any meds I had to be on could not interfere with me being able to wake up through out the night and couldn't make me so drowsy I'd pass out. 

At first I said no pain meds. I stuck with over the counter ibproffen. When that didn't help we did prescription strength ibproffen. After we tried Vicodin. Finally we settled on tramadol because it's non narcotic. He wrote the script for twice daily (every 12hrs) but 90% of the time I only take it at night. 

I'm sharing this because well I need to get it out somewhere. I HATE meds. I HATE taking them. Unfortunately they are just another aspect of fibermyalgia. 

There's nothing I can do to make people believe. I don't have the strength it would take to even attempt to make them see and what's the point anyway? I know what's wrong with me. The doctors know. Does it really matter if anyone else does? The way I see it I can either use the energy to unsuccessfully make other see or I can use the energy to get out of bed and attempt to enjoy my children even when in pain. I think the ladder option is my choice. 

For now I'll do what I've always done. Suffer in silence and blog about it. Someone out there will one day read this, someone whose going through the same thing, and will reach out to me. That's how support systems are built, by putting yourself out there to be heard (or read as it may be). 

Until the pain ends for good I will sit here and pray for God to deal me a better hand in this poker game of life. 

In a game of cards a royal flush is what you want to win. But in life it's the complete opposite. 

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:

Take What You Need

Somedays we need a little extra something to get us going it keep us going. Today I need:

Strength: it was a long night last night and I need the strength to be positive today and get through the day without wanting to hide under the blankets in bed. 

Understanding: people, even family rarely understand everything. Even my husband doesn't understand how often I'm awake at night with our little lamb because he's able to sleep through all the noise. I need him to understand Liam and I had a long night and that both of us could be cranky today. I would also like him to understand the words I say as for what they really are and not what he thinks they are. 

Patience: to deal with all the trials and tribulations that I am sure today will being. 

Healing: for both me and Liam. Liam's gtube stoma is irritated and red causing him discomfort.y allergies and back are causing many issues and I just want them to go away. 

Peace: for me today peace has two meanings. 'Peace and quiet' as well as inner peace. With all the stresses I encounter everyday I rarely experience inner peace. My mind is never at a peaceful state and this is causing sleep issues. I would love for the first time in 3 years to be able to close my eyes and think of absolutely nothing. 

Freedom: I would love the freedom to do what I want for just one day. I would love for both Liam and I be able to not worry about a feeding schedule, meds, breathing treatments. Or just simply the freedom to run or spin in circles with my kids until we're so dizzy we fall and just stare up at the sky. 

So today we will spread our arms wide, stare up at the sky, and spin until we're so dizzy we fall laughing until our sides hurt. 

Shedding Light

This article is so very true. Parents of a special needs child (sometimes even whole families) are exhausted almost all the time, mentally and physically and emotionally. Parents of a SN child know more about their child's diagnoses than even the doctors. I have done so much research on Liam's diagnosis than I can even begin to explain to you. Every month or so I re-research everything on the off chance there is new information. SN parents minds are always busy. I know mine is. "What time does Liam need a time feed?" "When is his next dose of meds or breathing treatment?" "What PT aspect do I focus on today?" "What appointments does he have today or comming up this week?" It's never ending. My brain is always consumed with thought on what my son needs. It is so consumed I forget things for myself. Since last Friday I've missed two doctor appointments for myself. Pretty important appointment to get results of an ultrasound and X-ray I had. I forget to call my friends and family back. If it has nothing to do with Liam's SN I forget to do it. He is the most cared for person in this house. And I know that it's not always fair. But it's what it is. The most important one to be (yes even more than being exhausted) is that SN parents are lonely. It's a very lonely journey. I went through 2 years and 9 months so far (that's how old Liam is) without having anyone to talk to. No one wanted to be around and see my son so sick. I understand they didn't want to experience that but did I want to experience that? And did anyone once think how it was for me to sit alone in NICU or any other hospital stay? Did anyone think about the phycological damage it did to me to want my son almost die on many occasions or to have him turn blue the very first time I held him because he wasn't getting enough oxygen? Nope. It never crossed anyone's mind. I'm not whining and complaining but sharing a truth that is so taboo to so many out there. This is the life. My life. Liam's life. I'm shedding more light on this article by sharing my thought, feelings and experiences. The only constant through all this was Liam. He was the only one always there but he was the one who was always sick. I would sit in his hospital room for hours when he's sleep and just stare out the window wondering "why us?" And "why do I have to do this alone?" That hurt almost as much as watching Liam fight for life. Being a special need mom I smile to hide the pain. No one wants to see you depressed, exhausted, or know anything about this. We have more bad nights that someone with a newborn. Emotional we can be unstable. I hold it together with my fake smile daily because when you can't you get criticized. You wear sweatpants out in public to pick up your older child from school, don't have the energy to put on enough make to cover the dark circles under your eyes and the world comes crashing down on you. This is life. Real life. http://m.voices.yahoo.com/5-things-know-parents-children-special-11493864.html

#specialneeds #parent #kid #mom #cdh #chroniclungdisease #gtube #tubefed #failuretothrive #gastroparises #life 

      {photo of Liam today in the car. He took his shoe and sock off and put all his toes in his mouth. Why? Because he was bored waiting for sister to get out of school. This is life.}

 

Christmas is 9 days away and with each day the excitement builds.

 

Our Elves are working over time making sure everyone is behaving.

 

Christmas pictures have been taken.

 

The tree decorated.

 

The present's all wrapped.

 

The stocking all hung

And the eve lights lite up

 

 

The kids have seen santa

whispered their wish list.

 

Cookies have been baked

Hand delivered to the neighbors

 

Family came to visit

 

Stories have been told

 

Laughter has filled the house

 

Cuddles have been shared

 

And Candy canes have been eaten

 

Every day is a day closer

The wait is a thrill

Cant wait to see their little faces alight

As they open their gift!

 

 

We pray you have a Merry Joyous Christmas.

...

...

...

...

 

 

 

Updates:

Liam is doing good. He has had no issues with his mediport and the pain from the surgery has subsided. He is back to being a happy semi-healthy sweet little boy who is growing leaps and bounds. He is learning so quickly. He now crawls all over the house, travels along the furnature, pulls things in and out of tubs and blows kisses. Tuesday he is getting braces for his ankles to help stabalize them. The idea is that his weak ankles are preventing him from walking or standing unassisted. The hope and prayer is that these braces will allow him to start standing and walking. WALKING!! Its such an exciting concept we love it! God has done amazing things with Liam and continues to heal our sweet little lamb. We couldn't be prouder or happier of our sweet boy. Liam still isnt eating by mouth but we've been making awesome breakthroughs. He now can put food in his mouth without retching! Sometimes he likes to eat cool whip, lick on suckers or take a small bite or two of a mini reeses peanut butter cup. Thats HUGE! And today little lamb had his very first candy cane ever and HE LIKED IT!!!  Feeding thereapy was approved and his evaluation is on Jan 7th so that will help to get Liam eating like he is supposed to. One of my Christmas wishes was for Liam to eat and I couldnt ask for more! Lanie has learned to write her name and has become great at drawing. We're encouraging her by framing some of her art. She gets so excited to see her work framed and hanging on the wall. Her imagination knows no bounds. We've been so blessed. Thank you all for your prayers.