Getting rid of the NG Tube!

Well, after last week we are ready to get rid of the NG tube, even if that means the surgery for the Gtube!  Last week, the tube fell out (tape came lose and it slipped out in the night) and we had to go in to the Pediatrician's office to get it replaced, the placement went smoothly and he handled it well but the week was rough- lots of up and down patches for him while we tried to adjust his feeds and cater to his needs, and was that lotion he just licked off his hands?  Our worry was growing at what was going on with him.   Then, Thursday night his tube came out again (after a forceful vomit session) and we went to have it replaced at the Pediatric Infusion Therapy Center- GREAT nurses but they used a ton of lubricant.  I didn't pay any attention (too busy holding him down), that placement didn't go as smoothly but he did ok after it was over until later in the afternoon and his irrational behavior started- he got pretty intense and I was worried he was going to hurt himself or pull out his tube...either way, it was sliding out because of all the lubricant -- the tube that we spent all morning coordinating a schedule to get it replaced!! The tube we did not want to have to replace again...I took his blood sugar and it was low and he was REFUSING to eat (had refused ALL afternoon), I barely got a few ounces of "feed" in him but the blood sugar did not come back up.  Through all of this, his irrational behavior continued and the NG slipped right out.  Darn it!!   UGH!  He did calm down after it, and I couldn't understand why he was now so much easier to calm.  I kept replaying it all in my head- how are we gonna keep this NG in until surgery?  And then it just hit me- that lubricant!  Oh my gosh- it would be down his nose, into his throat and down his stomach!! He can't handle crap like that- assume corn ingredients but I don't know!  It must've been making his throat BURN!  He was so much calmer, and finally drank something after it came out.    When we went to have it replaced, we requested them to not use lubricant this time and he has gone back to being a champ with it.    The things you just don't think of....

The NG tube has enabled us to keep the Alimentum RTF going through his gut at a steady pace, ensuring him proper nutrition every day without a constant struggle but also ensuring that he is tolerating it- each day that passes we are more assured in that.   And the upcoming scope, which will be right at the 4week mark of Alimentum, will give us the final pieces we need to be sure his body has accepted this formula and then we can plan to begin next steps (continued gut rest while he heals and then food trials in a month or two, maybe?!) Now if he has a safe formula, we don't have to do trials to get nutrients in his body so we can take longer to do the trials, or shelve a food easier.   If it's not 100% safe, he doesn't need to have it in his diet.  If we keep running into those walls as he turns 3, we may have to look further into why his body is not accepting food but in the meantime, he can be 2.   He can be 2 1/2.  I read a little saying today- that I in fact have a die-cut for in my scrapbooking materials somewhere....

Two and a Half

Hold him a little longer, 

Rock him a little more

Tell him another story

(you've only told him four)

Let him sleep on your shoulder

Rejoice in his happy smile

He is only 2 1/2 for such a little while!  (author unknown)

The past few days have been pretty good for him....we are marveling in his personality that we get to see for more hours of the day- he giggles, and plays trains, and pretends to be a puppy, and is initiating pretend play with his brothers, his words are increasing, and his frustrations are decreasing.  He is such a little fighter- to go through as much as he has and to still wear that smile when he gets the chance.  

Surgery for the G tube is coming up....