Updates On Dakota

OUR GILBERTS MOBIL DONATED A $100.00 DOLLERS TO CODYS FOUNDATION..

WE PASSED FLYERS OUT ALL OVER BY US TODAY. IT MAKES ME FEEL GOOD TO ALSO KNOW THAT A 100 PEOPLE WILL BE LEARNING ABOUT WHAT CDH IS..

ALSO, HOPE WE HAVE A GREAT TURN OUT FOR THE DOGS WALK FOR CDH..
6-6-2010. WE PLAN ON DOING THIS EVENT EACH SUMMER.
HOPE TO SEE YOU THERE THIS YEAR..
=0)

( The reason for this thread) so others can find this info about this trach! It needs to be RECALLED A.S.A.P)

I am right now so MAD! Cody has come so far,  From the time he was born until now he has done awesome! Close to being off the vent and now enjoying being a toddler who can move around off the vent!

At this time he still has his trach, weaning off the vent during the day. Only on it during nap time and at night when sleeping.

He has had his trach 2 years and 3 months. Just in the last week his trach has come out 8 times! It comes out all the way ( just laying on his chest) or it is in his neck, but out of place.

He has a 4.5  Bivona W/cuff pediatric trach. The makers of this brand have changed the make of the same trach. Removing the plastic connector that was over the neck of the trach. The only way this could be removed was to use the wedge.

What was nice about  this trach was that his HME or swivel of the vent could move on the trach easy, Now the NEW Bivona W/cuff pediatric trach  they have removed the plastic connector.

 This reason!! Not everyone knew how to clean them the right way.

Using the wedge to remove the connector before cleaning.. So after the trach was cleaned the wrong way, The trach would not be sterile.

With the connector gone, the swivel on the vent does not turn easy when Cody rolls over during sleep leaving the swivel in the same spot, this in return has and can pull on his trach.

2nd. When Cody is off the vent, He has to have a HME (provides humidification) keep in mind he is 2. He keeps removing the HME, During this time it is getting stuck on his trach and while he pulls, it is pulling his trach out or close to it leaving the trach in his neck, But out of place. He then cry’s and we fix it.  I am worried about his airway/Stoma getting damaged now.

Also, the part where the ties go in to hold the trach around his neck, The( eye hole) is so big now, Again due to people having a hard time putting the ties in the holes, so the hole is big.

So in the end now Cody has red blisters under that area, When ties are put on the right way you should be able to get 1 finger under the ties so that you know if they are on right. Not to tight or lose. It looks like his skin is being sucked into that hole. SO!! To fix that we then put a 2×2 under the trach to protect his skin. Now with the 2×2 under his trach we can not tell if his trach is getting pulled out or out of place.

We have been in touch with children’s memorial, from what I know other families have called with concerns with the new PED BIVONA.

ALSO, in touch with people at smiths-medical about this and sadly I don’t think they understand. There asking us and telling us how to put the trach ties!!

So, In the end if something happens to my Son. I will BLOW UP!!!!!

He is so close coming off the vent for good and next will be BYE, BYE trach…… So If the trach is or ends up being what hurts him…. I think this trach should be

RECALLED before something happens to a baby/kid who don’t have a good LUNG  reserve. (pulmonary reserve – the additional volume of air that the lungs can inhale and exhale when breathing to the limit of capacity in times of stress)

 Pictures of cody’s neck i’m adding later, TO show the BLISTERS.

What a day! But a awesome day!! Cody had ECMO Clinic today @ children’s memorial. The great news is he’s now 29pd.4oz. they had to cut back on some of his pedisure, LOL
never thought i’d see the day that would happen. He’s even taller. i thought so, when he was pulling the wood blinds in the livingroom,

life with a toddler, who has a trach is more fun them a toddler with no trach..

the best part is when thier weaning off the vent and have to do everything in 1 day,

into everything, when you say NO. they grab the trach and look at you. ” the look that can kill” LOL

~~~~~~~~~~THE BEST NEWS YET!!!!!!!!!!!!!! CODY IS NOW OFF THE VENT ALL AWAKEN HOURS…… ONLY ON VENT WHEN NAP TIME OR NIGHTS WHEN SLEEPING……….. OK… THIS TRACH WILL BE GONE BY THIS WINTER.. HE IS SOOOOOO AWESOME…. I AM SO DAMN PROUD OF HIM.

Cody is a blessing, not an inconvenience. This morning we took Cody with us ( with out a nurse) to burnt toast and to walmart.
he did great, at the resturant he had a spoon and was putting it in his mouth and i dipped it in tea and he loved it.

At walmart he had a blast in the shopping cart, Mikala pushed him. then we let him walk holding hands,
he just smiled at everyone and looked around. We let him walk around the toy department also.. It was cute..

once we got home he played for a little while, then off to sleep he went.. so worn out,

our dog nala has been having problems with hers eyes for the past month, We have had her to the vet 2 times, she has 2 different eye drops we have to put in her eyes 2 times a day.

her eyes are not getting better, and now she is walking into things.. We have this feeling she might be going blind.

We and the vet, have no idea what has made her eyes so dry, plus she gets thick gunk that covers her eyes, so we are always cleaning hers eyes. this afternoon after we got home nala stepped on Daisy. So we think its best Nala and Daisy are not both out at the same time. So daisy don’t get hurt.

We are praying Nala’s eyes get better.

Cody’s 2nd x-mas @ home. I’ll be updating soon after the holidays