Medi-Port Flush

I realized today that I have never taken pictures or shared them of Liam's Medi-port flush even though he's had it for 13 months now. It's something I have to do every month but it's never crossed my mind to share. So today as it was the day to flush the dreaded medi-port it dawned on my to share the process. Well pictures anyhow.

Liam's Tubie Journey

Liam Michael is no stranger to feeding tubes. In his 2 1/2 years he has had many different types of feeding tubes. His very first feeding tube was while he was in NICU.

August 2011

 It was a short journey and lasted only long enough for him to learn to eat by mouth via bottle.

August 2011

 He mastered that quickly and was tube free at discharge.

August 2011, Last night in NICU

Liam seemed to be doing very well at home.

Then one day Liam started eating less and less.

It became impossible to wake him up to feed him.

Keeping up with his strict feeding schedule just wasn't possible.

Liam stopped gaining weight.

He started loosing weight.

The specialist at UCSF decided it was time for a feeding tube.

The NG tube was Liam's first tube outside of NICU.

Last week of September 2011. Mommy made his heart.

What should have only been a few days stay at UCSF,

turned into 14 days.

We had to be taught how to insert the tube without doing damage.

The we had to wait for Liam to tollerate feeds

and gain weight.

Finally he was able to go home again.

But home didn't last long.

After only 2 days of being home we had to rush Liam to Children's Hospital Central CA.

He wasn't tolerating any feeds,

vomiting profusely,

and had trouble breathing.

It was a long wait to figure out what was going on.

At first they thought he has caught a virus.

Soon they realized it wasn't a virus.

Liam needed an Nissen Fundoplicaton and a Gtube.

This stay took 4 weeks.

Last week of October 2011

After the Gtube came many formula changes.

Then it was time for a GJtube.

No one could figure out what was going on.

We went through almost every formula on the market.

March 2012

Things didn't get easier after he got the GJtube.

We went through so many ups and down.

Randomly Liam would start vomiting.

The vomiting would cause pnuemonia resulting in a hospital stay.

This kept on for more than a year.

In July of 2012 Liam's GJtube had come out and we had to use a Gtube until they could get him into an OR.

He did very well.

So well we had canceled the surgery and planned to stick with the Gtube.

On the 5th day of having a Gtube,

Liam suddenly started vomiting.

No one knew why.

He ended up with pnuemonia and hospitalized again.

They put the GJtube back in.

After continued vomiting issues and tollerance issues,

they finally figured out what was going on.

May 2013 the surgical team at Children's figured out the mystery that had been stumping us all for almost 2 years.

The question always asked,

"Why is this happening?"

was finally answered.

It was a miracle!

And a HUGE shock to us all.

The balloon in the Mic-key tube's (G and GJ) was too big for his stomach.

It filled his stomach so he never felt hungry.

The balloon would also hit his pilorex randomly,

causing the vomiting.

We also learned that he has a Hiatal Hernia.

(Still un-touched to this day)

They tried an AMT mini balloon less Gtube.

Within 20 min Liam was hungry.

He started tasting foods.

It was amazing the change.

May 2013

Once he got  this new tube Liam seemed to just thrive and make HUGE strides.

At the end of June 2013 he started walking.

Running.

Growing.

Thriving.

Liam hasn't had a hospital stay since June 2013.

It's been 6 months now.

What is an NG tube?

What is a Gtube?

What does an AMT mini Balloon Less Gtube look like?

What is a GJtube?

Liam's Sick Again

Liam has been sick since mid-December. His pedi diagnosed him with a sinus infection on Jan 2nd and he has been on antibiotics since. He hasn't been tollerating night feed even at 35 mls per hour. I had stated doing boluses of blended diet through the night just to give him more cals since blended diet was all he's been tollerating. It's been rough on our little guy. 

Liam had another cranky day today. That's two days in a row now that he's seemed miserable. Lots of whining and lot of cuddles. Even from daddy who says Liam's just being a whiner and we need to my baby him. Hahaha funny daddy! I caught him in the act of coddling our little one.  You've seen his face! It's impossible not too. I felt like I had a tail today because he would follow me from room to room and just watch me and randomly grab my leg and hug tight and say "moooommmieee" I pat his back and say "Hi baby" or "yes Liam" or "love you too buddy" and he'd let go and continue to follow. It was really sweet. One he asked "moooommmieee up" so I picked him up and carried him into the living room where we sat on the couch and cuddled. After maybe 5 min he was ready to walk away from me for about 5 min the. He became my tail again. He melts my heart. This continued until about 6:30pm when he lost the battle and fell asleep on the floor with my fuzzy pj pants that he decided to carry around all day today. I laughed when he walked out of the bedroom with then held tight in his little arms. He looked up at me smiled and had laid his head down on them and said "aahhh". He has this new thing he does when he's hungry. He grabs his tube and says "eat". When I was preparing the syringe of food I let him stand on the step stool in front of me because he likes to watch now (also a new thing) and today I opened the container of blended diet and he immediately grab the syringe and sticks it in the container. Daddy was shocked and I just laughed. Liam already understands that the tube goes Ito his belly port and that the syringe goes into that port so why wouldn't he pick up that tr syringe has to go into the food first. Silly boy wants to do it all himself now. I applaud his smartness. It really shows that he understands how things work. Another he now likes to do is hold your hand while you walk. Even though we're just going to go grab a diaper and change him or go sit to do a feed, if its something for him where he knows he has to go he wants to hold your hand. I love it. Unfortunately the diaper rash from the antibiotics got bad and I did everything I had on hand including nystatin from his last rash. It didn't help. I went to the store today and got A&D ointment and after one use it looked 100x better! No bumps, not as red or as large. So happy I decided to try it. Liam hasn't been coughing anymore than he normally would. That icky cough is gone for about 2 days. No running nose either. I have him on the feeding pump right now at a reduced rate of 55mls per hr. praying he tolerates it because he gets more cals in the long run at night this way. If he tolerates tonight ill increase it tomarrow night. We also haven't been letting Liam outside the past few days because of the air quality. I've gone out to the store a few times this last week and I'm so stuffed up from it. Liam does NOT need to be out there. Also more good news no extra breathing treatments have been needed over the weekend! So happy little lamb is feeling better. 

Liam coloring:

2013 In Review

2013 was one of our best years yet as a family of 4. 

Lanie turned 5

She said it was her "BEST Birthday yet!"

Of course she always says that lol

My Valentines Day mini photo shoot for the kids turned out cute.

We supported Heath Defects Awareness in Feb as well

Tube Feeding Awareness

and Liam first set of tubie pads

Liam started Physical Therapy

And got his first set of feet braces

We had a few hospital stays as well.

Liam also got rid of the GJtube and upgraded to a AMT Mini Balloonless button. Turns out the balloon in the Mik-ey buttons caused the sparatic vomiting.

St Patty's Day was a Blast of Green :)

The Mayor of Visalia approved CDH Awareness week

and we were presented with a plaque.

All because I shared Liam's story.

Lanie became an artist...

I bought two canvases and let Lanie go to town painting.

She made me these two beautiful works of art that are hanging in my house.

Lanie loves creatures "bug" and small 

Meet Laniebuggie, Lanie's friend Ladybug.

She swear it followed her from our house across town to her Uncle and Tia's

Liam doned a hat and saddled a horse to ride off into the sunset

Liam loves the swings

He was still on a continuous 18 hour feed at this point.

Just a few months later he was changed to bolus daytime feeds.

CDH Awareness Balloon Release

We celebrated Easter for 2 days :)

Liam started walking!!

And started eating

We celebrated 4th of July

Liam turned 2

I turned 30 and we celebrated Liam's 2 year CDH repair surgery Anniversary

Liam had his first trip to the beach

Lanie and Liam had their first boat ride in Pismo

I took Lanie to see Monsters University

Lanie did her own Jamicure

Lanie Started Kindegarten

Lanie got her ears pierced

Remembering 9/11

We got a bunch of new pets this year

Went through many fish...

And got 1 puppy.

Halloween was a blast.

Liam was able to walk and say

"treat treat"

Random Silly Pics

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Just in time for Thanksgiving

and a Thanksgiving Video Chat

Thanksgiving

Christmas

Lanie got her first hair cut...

Because she got a Barbie comb stuck in her hair

Liam chilling during feedings

Bringing in the new Year together

Random facts about the year:

Liam had 4 hospital stays in 2013

His last hospital stay he was discharged on June 28th.

YOU DID THE MATH!!

He hasn't even been to ER the entire time.

This is his longest stent yet.

The prior record was 8 weeks.

Lanie is doing great in school.

She is very creative.

Makes rosette flowers after only watching me once.

At the rate Lanie is growing,

she will be my height or taller by the time shes 10.

Liam isn't gaining weight currently.

But he isn't loosing it either.

He is however getting taller.

We went through 8 fish this year (tank issues)

Our dog Willie has trippled in size since we got him a few months ago.

I started knitting again, 

but to date haven't finished a project.

This was the first year Liam has eaten his birthday cake...

and opened his own Christmas presents.