G-tube and help

Ok, mamas, you were right.  After a week of being at home with the new g-tube, I admit one of my thoughts was, “I wish we’d gotten this sooner.”

On Thursday, we had a follow-up appointment with GI, just to make sure feedings were going well.  They are.  We aren’t even up to our target goal (8 ounces, 5 times day) and LJ had gained 2 pounds since Friday.  2 POUNDS!!! Granted, it’s the 2 pounds we lost this past month, but still.  2! POUNDS!  It’s a huge deal for us.

I can already see a difference.  His ribs aren’t protruding as much.  His delicious cheeks are even rounder, fatter.  He seems to have more energy.

The best part is, we don’t have to fight at meal time anymore.  I downplayed eating time with him a lot.  It was stressful trying to make sure he ate enough.  There were battles when he was too tired.  At one point, I was practically force feeding him.  Many times, we would all end up in tears at the end of the meal. 

But there were times he did really well, too.  Like the past few months.  And this made me really question our decision.  But after 5 illnesses this year, his eating and drinking habits suffering a little more after each one, and after the last illness where he lost 2 pounds, we knew what we had to do.

And it was the right decision for us.

We don’t have to worry about changing his schedule because of all the therapies we have, daily.  We just hook him up to his backpack and go.  We still feed him by mouth when we can… which brings me to an exciting part…

We’ve qualified for an in home nurse!

I’m nervous about bringing someone in my home, into my family (we have lots of hours) but I’m excited to have help.  I’m excited that someone will be able to do with LJ all the things I don’t have time for because of Noah or trying to work.  I’m excited he’ll have more individual play time.  I’m excited to have another person I can talk to about our life that will get it after a few days with us. 

We decided to meet the nurses before just signing up with one.  I’m glad we did because the first one was kind of bomb.  Then again, we’ve had such great therapists and have sought out great doctors, that our expectations may be kind of high.  I know that anyone will fall in love with LJ, but we want someone who’s passionate about him and their job.  Someone that will be a part of our family.  Someone that will relieve stress and not add to it.

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3 Responses

  1. This is an encouraging post for those who are still struggling with this decision. Glad to read you are not giving up on feeding by mouth. I have a series of posts on eating and feeding – linked in a box in my middle column.

  2. […] biggest reason we decided on a g-tube (feeding tube) for LJ was because everytime he got sick, he would lose any progress we made.  Then, […]

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