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: