As you can see, it's not a perfect fix. See all the tubing under his bum? He continually scoots over his NG tube port and then it opens up and stomach "juice" leaks all over the tile. Gross.Hopefully that problem will be solved tomorrow! For the first time ever, we will be able to take out the NG tube and never put it back in. Owen goes in for his Gtube surgery at 9am tomorrow. Please pray for NO complications. If he weren't in heart failure, I don't think I would be so nervous. It feels right, and it took me almost 20 months to get to this point, there is no turning back.
I'll update throughout the day tomorrow and I love me some pre-op pictures in those purple hospital gowns.
34 comments:
Good luck tomorrow! The g-tube is wonderful. I put it off for 2 years and battled failure to thrive, oral issues etc.. The surgery is fast (like 45 minutes from the time they are put under to the time the surgeon comes to speak with you). We were in for 4 days post - op in a monitored bed (surgeon wanted PICU due to his heart but it was full so we agreed to a bed across from the nurses station, private with the alarms etc...). Pain the first 24 -48 hours was the worst, he needed morphine to stay on top of it. After that, tylenol for the rest of the week and then it was fine. For the first 2 weeks however he was very protective of it and was upset for cleaning/moving it. And then, like a switch went off, it was all fine. And we LOVE it. We're getting the MIC-key button at the end of Oct and I look forward to not having to tape the PEG tubing anymore. You'll love it and so will he. And the pump is so fabulous.
Where did you get that backpack? The one we got with our pump is so huge I could wear it so I did some sewing and made my own for Chris.
Good luck, will be thinking of you and Owen!
Wendy
(fellow heart mom to Chris, age 2)
wendy.walton@gmail.com if i can help with g-tube stuff at all
We'll be thinking of you all tomorrow, and hoping that the surgery is swift and smooth, so you're all back home in no time! I bet you can't wait to get rid of that NG tube!
With love, Alison x
I love his little back pack---thats the cutest "baby got back" that I've ever seen ;-) I will most def. be praying 'extra' hard tomorrow! Can't wait to here the updates.
Love, Hugs and lots of prayers-
Tiff
Wow, look at him go! I will be praying for tomorrow. I know it'll be such an exciting time for you.
We'll be praying for Owen (and his parents tomorrow). Love the backpack...he looks like a little Marine (Lord knows he's tougher than any I've met).
Peace,
Rolf
My daughter, Megan, absolutely loves Owen! We read your blog and pray for him everyday...we'll be sure to say an extra prayer for him tomorrow! Good Luck!
I will be praying and thinking of Owen tomorrow! Hope it's a piece of cake. :)
Good luck to you! My little boy Nathan was born in January 2008 with Tetralogy of Fallot and a few other problems. He's had a Mickey button since he was 7 weeks old. We still struggle with the weight gain but its not due to the feeding tube. I can't tell you how big of a difference that button has made to us. I was really freaked out about it when Nathan was in the NICU but looking back I think its the best medical decision we've made for him. Its not totally perfect; the mickey comes with a "Y" extension port that occasionally will pop open and spread stomach juices everywhere. When Nathan gets rid of the button (when he decides its ok to eat) we are buying new carpet:). We went straight for the button and didn't have to do the PEG.
I have to admit that I've been blog stalking for a while, but Owen is so gosh darn cute! Good luck with everything!
Praying with all of my heart and soul for Owen to have a successful surgery, one without any complications. You guys are all in my thoughts and prayers.
I would be nervous too! However, Owen is a determined little guy, and you are SO in tune with him and his needs. As a mommy, I don't think any surgery is an easy one. I will be praying for you all and wll be watching for the updates. Good luck!
Allison
Good luck tomorrow! Bree's g tube surgery was only like 20 minutes, by the time I sent out the text saying that the surgery had started I didn't even get to finish reading all the texts coming in before I had to text back that she was out.
Bree also has a backpack like that, and we use it often when we are out and about. She isn't mobile yet, but we are hoping that she will in the next 6 months...only time will tell!
We'll be thinking of you all tomorrow!
If you have the option to go right to the button and skip the PEG I totally would. Here at our hospital (we're in Canada and deal with Sick Kids and McMaster Children's) that was not an option. They insist on the PEG for 3 months then the button.
Mainly b/c the PEG is a long tube and you've had enough of taping tubes! Chris' is like 10", it's ridiculous to tape on him as he's Owen's size and it has to be looped and taped to his belly. Microfoam tape by 3M works great and is easy on his belly skin but you likely are well versed in tape :)
We're pleased to be heading into winter with a reliable way to feed him ~ last winter was horrid with many trips to the ER for dehydration and constant vomiting.
Wendy
Hope it all goes perfectly smooth tomorrow.. I know it will.. It'll be a tougher than normal (but you're used to pretty tough) week and then he'll be back to his normal self but better! love the backpack..that is a perfect size. I don't think Bela would keep it on!
I'll be looking for those updates..
Good luck tomorrow. We'll be saying extra prayers for Owen.
Wishing Owen the best! He is so adorable. Love the back pack. What a strong little guy and momma. Praying for smooth sailing for you.
Oh, I'm nervous for you. It may not be heart surgery, but it's still a big deal. We'll be saying lots of prayers and thinking about Owen tomorrow. I hope all goes well and we can't wait to see that cute little face minus a tube.
All our positive thoughts and prayers for Owen, his doctors and your family tomorrow!
Owens little cheeks will be so happy tomorrow! :) I once saw a tiny little guy with a backpack like that and it was so cute on him, I told his Mom. I then felt myself blushing for opening my big mouth when she explained what it was for.:0(
Owen is covered in prayers for a quick,safe and painless procedure.
I am a worrywart, so I know what you are going through thinking about it all. Prayers for you too for peace of mind.
We will be checking in tomorrow and praying for the very best. He has been through so much worse, but I can see why you are still nervous. My father in law works at Phoenix Children's and they have expressed multiple times how much they would love to come meet you guys and see Mr. Owen in person. If you are stuck in recovery for a few days, let me know if you would be up to meeting Grant's awesome grandparents!
You don't know me, but I follow your blog and I'm in love with Owen! I'll be thinking good thoughts for you tomorrow. I hope the surgery goes well and Owen will be back to his usual smiley self soon.
Best of luck tomorrow. You will LOVE his new g-tube. Keeping you in our prayers.
Praying for ya! Good luck Mr O. Hipp Hipp yipee for no more ng tube!
Oh I love the new back pack. How exciting it must be for everyone! He looks so darn cute. I will keep you in our prayers for tomorrows big day!
Praying for all of you!! You will be so happy to have the g-tube. The Lord will be with you every step of this journey.
Jeannie
New Heart-2/3/07
Maybe you can wind up the types lightly with a rubber band,so that they do not drag. Sorry, I don't have any better answers. He is cute anyway.
I just found your blog through another heart baby's blog. I am a heart mom to a precious little baby with congenital heart disease. The g-tube (MIC key button) is absolutely the most wonderful thing ever! It makes administering meds super easy and we don't have to wake her up when it is time to feed her and she is sleeping! We had a g tube for 3 weeks and then they put the button in. We didn't know it until we went back in for a follow up but be sure your home health company sends you the extensions (when you get the button in). They are suppossed to be replaced every week. We didn't know that and were using the extension set we recieved in the hospital for a few weeks and just washing it out every night. Good luck with everything! I pray everything goes well!
Saying an extra prayer (or two) for little buddy tomorrow! I'm sure you're going to love kissing that "tube free" face!!! Thinking of you tomorrow!
Praying, praying, praying!!!!! I can't wait to see tons of pictures of sweet Owen WITHOUT his NG...best wishes!
Praying that everything goes well. He is such a little trooper. I always keep your little man in my prayes. There's just something so special about Owen.
I hate stomach juice.
Good luck with pre-op. That's always a surreal experience! We'll be thinking of you guys!
Thinking of you guys this morning and praying for Owen buddy! We're looking forward to updates and pics of that sweet face!
Praying all goes well for the g-tube surgery! Love the new backpack thingy, I imagine that well help him get even more mobile!
Praying everything is going well today! Been thinking of the little guy all morning.
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