There is just one problem..... 
Owen is on a leash with his feeding pump on his IV pole and his oxygen tubing. Sure, the first day of his discovered independence was great. I followed him around all day encouraging him to go a little further. I pushed his IV pole around behind him and helped untangle his legs from the oxygen tubing. That was day one. Now, I will be in the kitchen cooking when I hear "aaaahhhhhh mmmmmaaaaammmmm" and I come running to find Owen holding his tape on his face so his tubes don't come out. Poor guy!
He is on hourly feeds so the formula drips over an hour -- FIVE times a day. The rest of the time it's just a matter of avoiding strangulation on the oxygen tubing. Yikes. Anyone have any advice?? I'm pretty sure Owen would appreciate it too.
Other than that little obstacle.. he loves his new freedom to move. He was under the table, in the curtains, through the kitchen, down the hall and into the den. Oh and his diaper was not filthy dirty on the bottom from scooting on my sparkling clean tile floors, because that would be just gross :).
I want to believe that the increased medications are really helping him feel better. I don't expect his heart to come out of failure. I am just happy that he is finally starting to have energy, sleep less, eat a little better, and has the strength to move around. WAY TO GO OWEN!!!
----------------------------------------------------------------------------------------------On a completely different note.. please say a Prayer for our dear heart friend Lindsay. She recieved her new heart over a week ago and amazed us with how quickly she was recovering! She has taken a turn and is on life support. Go HERE to read her story.
17 comments:
I would love to see a video of him scooting...I would love to see if he has the same technique that Carlie had (I have a video at the bottom of our blog that I made for Carlie's birthday last year and I put a clip of how she scooted in there) :) Hopefully you'll get the whole feeding/oxygen thing figured out...
As for Lindsay, so, so sad and heartbreaking...
Hope you guys are staying cool!
Hooray Mr. Owen! Grant's feeding pump came with a stylish mini backpack that we wear when we are transporting him. Any way you could get one and let him wear it? At least then it would only be the oxygen to tangle with. Lindsay's turn for the worse breaks my heart. We will pray for the whole family.
Love his new found freedom and sorry it is causing a slight problem. I guess it is just a blessing to have that problem. You made my hert skip about six beats as I saw the title of your post - not funny!! I pray your friends heart holds out!!!
Aww~what a little sweetheart Owen
is :) Way to go on his new 'travels!'
I'm sitting her drawing in my mind some sort of contraption, to make it easier for his to scoot without getting tangled up. How about a little something on wheels? :) If I come up with something, I'll sure let ya know! Glad to see he's mobile, and who knows, maybe he'll figure something out all by himself...you know how little ones are. :) (((HUGS))) G'Ma~rella
Maybe an after school babysitter would help while you are cooking? Just someone to play with him and make sure he stays untangled?
Poor little man! Maybe it will be an incentive to walk and hold onto it.
So adorable! What a challenge to be hooked up all day. I'm amazed that he was holding the tape to his face- not trying to pull it off!
Our feeding pump is smaller and has a tiny little backpack for when she is on the go. We just stap iton K's back and tuck in all the cords. Good Luck!!!
Way to go Owen! That is so exciting. What a cutie holding on to his face to save the NG/oxygen. He is just so stinking ADORABLE!!!!
Yeah Owen! So glad to hear he is getting stronger. My daughter had worn a back pack, but she is an adult. I wonder if they make small ones for tykes. It's something worth looking into. The only thing you need to do is change and charge batteries. As for the oxygen, have no idea. Sure hope you find something soon. Our prayers are still with you all. Love and Blessings to all of you.
Yay Owen! Oh, I do hope you find a technique that works for your clever little guy!
Cxx
Oh my he's so incredibly adorable! Bless his heart though...I feel bad that he's getting stuck!!! I won't admit when Allie started crawling around that her feet and knees were dirty because of my floors...I would never have floors that dirty!!!!! My heart is hurting for Lindsay right now...I've been praying constantly for her!!! Praying she makes a quick turnaround and recovers!!!
Alan does the scooting too which causes all kinds of havoc when he gets caught on one of his leashes. I don't know of any solutions though..
I recommend the backpack too. We also have a smaller pump. Maybe you could contact your DME to see if they have anything smaller to trade you.
As far as the oxygen. If you run the tubing down his shirt and out the leg of shorts or pants there is very little chance of it going around his neck. I used to put my son's O2 tubing down his back and cut a small hole in his footy pj's to run it out of. It would go around his waste instead of around his neck.
Good luck and congratulation on having a baby on the move!!!
Oh my thats so adorable, I want to see a video!!!! He is so strong and overcoming so much!!!! What a true inspiration Mr. Owen is!!!
Yay Owen!!!
As far as the feeds go? We have found 2 ways that work for Rhett.
1. We plop him in his high chair for an hour in front of the TV and he gets to choose a DVD to watch.
2. He has a back pack that his feeding pump and bag fit in and we strap that on him and he goes about his business as usual.
The backpack is just his size, and it doesn't even seem to phase him.
As far as the oxygen? Well I never have found a solution for that other than threading it down his shirt and out his leg. It seems to get less tangled, and it's not ripping his cheeks off in the process.
Can I have some of your good weather? I am SO sick rain and cool weather. Gah!
If you have a Kangaroo Joey I think they make a backpack for it! I would call your enteral company and ask!!! If not- ask for a Zevex Infinity - they are the smallest pumps on the market and even when Ky was only like 16 lb she could carry it. It COMES with a tiny (I mean TINY) black backpack! You tuck tubes, pump and milk in the backpack and they can have at it!
I would just call your company and tell them now that Owen is mobile you need a new system and ask what their suggestion is. Things do change a lot once they can move... LOL
I was going to recommend the little back pack for his feeding pump also. As for the O2 tubing....we don't have to use O2 all the time, but when we do, I have really long tubing connected to the concentrator so Lily can pretty much go anywhere in the house (even upstairs) while attached. The tubing can get pretty tangled, but at least she can get around.
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