Thursday, August 12, 2010

A TUBE FREE boy!!!!!

Just writing that title brings tears to my eyes!  Literally!!  Today was *the* GI appointment.  I would be lying if I didn't admit I was very nervous.  And things were looking a bit on the gloomy side for a few minutes there.  It would be Jed style to NOT throw in a monkey wrench to everything he does!!  Yes siree, that child did indeed fall a wee bit from the growth curve he was on.  Not exciting news to be sure.  However, his GI doctor still felt that he was doing well and left it to us if we felt comfortable enough to remove Jed's tube.  We have been waiting, not so patiently at times, for this day to come.  With the information that the doctor gave us, and knowing Jed, we did decide to take his tube out.  We feel that although the tube was sustaining him we could NEVER get ahead with Jed in the weight gain area.  Right now Jed has been eating very well, so his appetite is there, and he loves a very wide range of foods (much more than any of our kids!).  So the problem now isn't if he will eat, which was indeed one major problem Jed had.  That has resolved itself.  Right now we feel we are facing absorption problems.  He eats just as much as Jonah does and he is a stick and Jonah, um definitely not a stick :-)  So we are now entering new territory in a way.  Even though we have wanted this tube out for so long, I have to say it has a bit of a safety net feeling.  But Jed has had a tube in him for feedings since he's been 7  months old.  He really does not know life with out a tube in his side.  Here are a few pictures of his tube progression.

Jed with the ng-tube.  Here he is at his first birthday.  He only played with the cake, he never actually ate any of it!  Here is the ironic thing....I had Jed pick out a cake today for us to celebrate his freedom from the tube, and he picked out the same cake he had for this birthday above!!!!  The first cake he wouldn't even taste...the second, yum, yum :-)

Not sure why this picture uploaded in the wrong orientation.  But you can see the first tube he had.  This one was designed to clamp his stomach to his abdominal wall.  A very painful experience for him :-( 

This is the tube he has been living with since November of 2007.  Well, not that *exact* one, we needed to change it every three months.  It has served us well, but no longer needed soooooooo loooooong tube!!!!

Here he is, our big boy, without a tube!!!  Don't worry I wasn't going to share what the tube site actually looks like, not a pleasant picture to be sure.  Jed was a bit thoughtfull over it.  He kept walking funny, stopping, touching the site.  I'm sure he wasn't sure what to make of it.  When it came time to take it out I called him over and he said, "no".  He knows it hurts to get it out.  I asked him if he wanted the tube out and he said, "tube, bye-bye?".  Smart kid!  I let him throw the tube out.

Jed's cake from last night, the same design he had for his first birthday.  He dug right in!

Licking off the frosting on the tractor.  He was pretty happy about having a new tractor. 

When it came down to taking out the tube I got pretty nervous.  All the 'what ifs' came flooding in.  But I realized that unless Jed was nice and filled out like his siblings I would be nervous to take it out.  Again it's a safety net.  One we can utilize in the future if needed, but we really want to see how Jed does living without it.  We will be finding some ways to get some extra calories in to him without adding bulk.  Of course the GAPS full diet alone would probably give him more calorie dense nutrients since there are no startches or grains.  Lots of meats, fats, veggies and fruits. 

Off to feed the crew!


Jeremiah said...

I think that the tractor cake was for his second birthday, wasn't it?

Bethany W. in mid-MO said...

Wonderful news!

Kathy said...

SUCH wonderful, incredible, cry worthy news!!! LOVE the cake!! Somet hings need to be celebrated!!

Pam's Pride said...

I am so happy for you! That is definitely worth celebrating! I pray that all goes well with it out and that he heals quickly! Jed looks amazing!! His hair, skin, and eyes look so much healthier! You are doing a fantastic job!!

Nancy M. said...

That is such awesome news! The cake is almost as cute as he is!

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