Monday, June 25, 2012

Snapshots of Last Week

Mikan and Anica "sharing" the iPad as they watch Super Why.

When Mikan heard it was the first day of summer, he decided he needed to wear a baseball hat and sunglasses outside.  


Anica decided she needed a hat too.

An example of what Mikan does in his spare time...

My favorite photo from Uncle Jar's visit.  Mikan made this face after we told him to smile.  

Monday, June 18, 2012

G-tubeless Update and Big News

2 weeks post g-tube removal Mikan is doing well.  The site looks clean.  It looks like he has another belly button.  It is still draining slightly (only visible in small amounts on a gauze pad).  This bothers me a little since his doctor said it should seal up within 24-48 hours.  If it refuses to seal, he will have to have surgery to stitch it up.  I was hoping Mikan might dodge this procedure, but it's not looking good.

Mikan is very protective of his stomach.  He regularly asks where his g-tube is and always wants the site covered with a protective pad (even though it has healed enough that it doesn't need to be).  He talks about how Mom and Dad got their g-tubes out and how he is just like us.

I am curious about Mikan's weight.  Ever since he began drinking juice his Pediasure intake has reduced.  I'm not sure his eating has improved enough to compensate.  Time will tell.  He isn't scheduled for a weight check for a while.

Mikan is doing well in his ABA therapy school.  He attends his school 3 days a week for 7 hours a day.  Right now he is still in the middle of assessment and testing, so they haven't cemented any goals or a progress plan for him.  We expect this meeting in a week or so.  He enjoys going to the school and the staff seems very knowledgeable and helpful.  We are excited at the small amount of progress we have seen already in the few weeks he has spent there.

We spent our Father's Day weekend at home.  John has been traveling for work-related functions all month so the kids were excited to spend some time with Dad.

Gensic Family News: Baby Gensic #3 is expected just before Christmas.  Mikan acts pleased to be a big brother to another one.  He always says he wants it to be a girl, and he wants to name her Anica.  When I tell him I think his sister would be confused, he just laughs at me.

Wednesday, June 6, 2012

Totally Tubeless! (WARNING: This post contains yucky images)

The past week has been a bit of a whirlwind, but it's finally starting to calm down.  Last Thursday Mikan saw his new physiatrist in Indy who confirmed that Mikan did not need botox and that he actually had great ankle range.  She even said that the night bracing regimens he went through over the past year were a treatment specific to our region and that it wasn't a widely-recognized practice.  She agreed that Mikan needed additional therapy and time, but she thought he would continue to progress.  

The following morning we traveled to Chicago to see a GI doctor and food-chaining specialist who we hoped would removed Mikan's g-tube.  He agreed Mikan needed the tube out, but, unfortunately the office we were seen in didn't have the correct tool to remove it.  The tube Mikan had for the last two years is a Mini-One non-balloon.  It requires a special tool to remove that must be inserted inside the tube to stretch out the disc that holds it secure against the inside lining of the stomach.  The tool stretches the disc thin enough to slide back out through the stomach opening.  This sort of g-tube (although it has worked wonders for Mikan) is not used in the Chicago area that often.   

Yes, I called ahead to let the office know about Mikan's specific g-tube and asked if we needed to prepare anything before we came.  No one returned my call.  I was trying to prevent a situation like this.  So we wasted our Friday in Chicago.  They were apologetic and told us to go to the GI doctor who inserted the tube (in Ft. Wayne), and they sent Mikan home with a Candy Lane game.  On the way out John muttered something about getting a complimentary gas card instead.

Mikan's tube was a mess by the way.  It was two years and five months old.  These tubes are supposed to last 6-12 months.  But, if they aren't causing any problems, doctors tend to leave them in, since removal is not easy.  But Mikan's tube had been falling apart and wouldn't even close anymore.  He was beginning to develop skin irritation from the gastric juices that leaked.  I hurriedly called the Ft. Wayne office to set up an appointment ASAP on Monday.

Fast forward to Monday: Apparently patients are supposed to not eat or drink anything before g-tube removal (No one mentioned this to me.).  As the doctor is trying to take the g-tube out, gastric juices keep squirting out of the tube, causing his tool to slip.  He can't lock his tool securely since the outside of the tube is torn.  Mikan is screaming of course and begging for the doctor to let him take the g-tube out all by himself.  But yes, the tube did come out.  Afterwards Mikan proudly announced that his g-tube was gone and now he had a "regular tummy."

A "before" picture.  Mikan's g-tube no longer stayed closed, so we had to tape it shut daily.

Yuck!  The disc at the bottom of the tube is supposed to be round.  Much of it has deteriorated.  2 years and 5 months is a good run though.  Thank you Mini-One non-balloon.

Look everybody!  No more tubes!

Mikan's eating is still horrible by most people's standards; however, his regular Pediasure intake is consistent, which is why his doctors don't think the tube is necessary.

Goodbye t-tube.  We appreciate all you've done for us.  But this year Mikan will finally be able to wear a life jacket since you won't be in the way.  He won't have anymore stomach infections.  I won't carry around syringes and extension tubing or a back-up balloon tube.  On the other hand, I won't be able to slip Mikan's antibiotics through you anymore, but I'll figure a way to manage in your absence.