Parker came home from the hospital with a ng tube running down his nose into his stomach. An ng tube has it’s benefits. I can give Parker his (zillions of) meds quickly and without a fuss from the little guy. I can fill up his stomach with bolus feeds three times a day. At night we run a continuous feed from 7 to 7. I don’t have to worry about him not wanting to eat or being too sick to care to eat.
Parker can also multi-task when he has an ng tube. For example:
He can sleep and not miss a meal:
Or sit around and play with toys and watch a favorite show and not miss a moment:
But there is a downside to the ng tube idea. Parker pulls his ng tube out at least 3-4 times a day. Then we have to go through the rather stressful ordeal of replacing the tube back up his nose, down his throat and into his stomach. Not fun for any of us. Especially when Parker yanks it out at about 4 in the morning and formula wets the entire crib and the kid……
This is what naughty looks like without an ng tube.
Finally, a prayer request: Parker’s heart rate has been on the high side today. This usually signifies that his immune system is trying to fight something off or his red blood count is way low again. Would you please say a prayer that his body can heal from what ever it might be? We still hold great hope that this trach will allow Parker’s ph levels to recede and for his heart to not have to work so hard. For this to happen we have to keep him healthy.
Thanks. 
Nothing like multitasking! Praying that Parker can beat whatever he seems to be trying to fight off … don’t get sick Parker!
Hey Tammy, when you get a chance email me about a diaper bag for the stroller – I might have something for you if you’re interested.
Prayers that Parker’s body heals so his heart can take it easy.
Parker is soooo cute! I hope the next time I take a trip out your way that I am healthy so I can meet the sweet, mischievious boy in person!
Hugs,
Kei
Of course he’s getting sick! You just took him into the doctor. My non medically fragile kids get sick after a doc’s visit. I can only imagine what it would do to Parky.
I will pray for him as always. Hope it’s minor and quick.
He is a multitasking marvel! And I thought I was good…
I want you to know that me and my five year old daughter are saying a prayer for parker tonight.
What a silly boy feeding the bed.
Here’s a website for hytape. They will send you some for free. It’s much easier on there face then tendergrips. It might be worth a try, to see if it helps keep Parker from yanking out his NG.
http//www.hytape.com/
Will be praying that he stays well
He’s always in my prayers – I will say a special one to keep him healthy in this fragile time – But I just have to say that last picture is WONDERFUL!!! He’s such a Q-T!!!
I know all about having a child yank out an NG tube in the middle of the night. Hopefully he will start eating more on his own and not need it for too long.
we had a ng tube for a while…it just got to hard so we put in a “button” on the side of her stomach..it was great…no more pulling and no more fear of inserting it in to lungs. and she was free to do what ever (its a button on the outside and a ballon on the inside) you just open it when needed…did worked GREAT….
have a good weekend
Have any of the doctors ever mentioned trying Epo to boost his RBC’s? He is such a complex and fragile kid that it may not be an option, but if his body could produce more and he didn’t have to worry about transfusions and such, it sure would be awesome…..
I hope his heart rate lowers a bit – Parker needs a break!
He’s just so cute.
NG’s are quite annoying and he’s so brave. I don’t have much dealing with little kids and NG, I tend to put them in older people and they pull them out too! At work tonight I put in two, there is no way we could convince a family member to do it for us!
I’d hold off on a PEG for as long as you can. His little body has so many devices already, the colostomy and a tracheostomy as well as a gastrostomy, well something to discuss with your paediatrician, does make it easier and then you get to see a tube free little cute face, that has gotta be a plus.
Ok that is far more than my two cents worth.
Still in awe of what you do.
Praying for good health! He’s so cute in that green color!
Blessings~
Look at Parker’s fun room!
And of course I’ll keep Parker in my prayers. I hope today improves.
Yes, yes, yes, we will keep praying for him. Even my little 3 year old prays for Parker. Only he says it like “Bwess Powkow” really fast in his list of things to pray for.
Multitasking at its best
Got the prayers going 
Oh go here http://treasuresandsnares.wordpress.com/2007/08/27/now-what-and-the-list/
You have been awarded
wow.. he is quite the multi-tasker.. you cant forget to say he is cute at the same time too!!
prayers he stays healthy so is sweet body can heal……
I hope it does its job, and hopefully gives his system a rest. We’ve got friends here that have a 1 year old on oxygen and tube fed. Might be going to a peg soon as reflux is an issue. He is used to the tubes now, but his dad is a vet, so can handle the messy fiddly medical stuff well when he pulls them out.
Attached to all those tubes and wires is the cutest little boy!!! Thanks for my Parky fix. I LOL at the “naughty” photo and comment.
Prayers are said multiple times daily at my house for Parker. And our prayers will continue.
The boys say “hi Parker!”.
Hugs. ox
Wow, what a telented little guy! I’m going to be fretting about him ’til I hear he’s OK now, though…
I’ll be praying for Parker and his immune system. Absolutely, sweetie!
He’s so cute Tammy!
I’m keeping him (and you) in my prayers.
Oh my goodness. I just got the book “Gifts”, and as I turned to the 7th story I nearly wet my pants with excitement over seeing my little buddy Parker in my new book. How cool is that?
I am hoping and praying for Parker’s heartrate to normalize without intervention or problem.
I love the pic of naughty Parker. He is just so darn cute.
Of course, you always have our prayers.
Naughty, but oh so cute. I just love his little face
I will say a prayer for him. Are they going to be placing a G Tube? You wont have to worry about him pulling it out as much and still has the same benefits.
♥
We continue to hold Parker in our prayers. I love the latest photos of him. He always makes me smile. Sending you lots of hugs.