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I have had many people ask me what, exactly, is an Imperforate Anus as well as a Colostomy. Not many people are familiar with these terms. That’s okay, we have come across nurses unfamiliar with an Imperforate Anus.
Unfortunately we live in a society where talk about our bodily functions, especially anything concerning the health of our bowels is pretty much taboo. You may be surprised to discover exactly how many people wear ostomy bags.
Parker was born with quite the list of medical issues, an Imperforate Anus being one of them.
The day after Parker was born he was Life Flighted to PCMC for a life saving procedure in which the doctor’s created an colostomy for Parker. You can read more about a colostomy here.
While an Imperforate Anus is not something that just babies with Down Syndrome can be born with, research tells us that of babies who are born with both Ds and an Imperforate Anus usually have a very good chance at obtaining bowel control because of the type of Imperforate Anus they tend to be born with.
Once Parker is healthy enough to withstand the rigors of a PSARP surgery, we hope to be able to take him to www.cchmc.org to have both the first and second part of the PSARP performed. The second part of the PSARP will include the reversal of Parker’s colostomy. It will be a very expensive surgery that our insurance will only pay a small ‘out of provider service area’ amount towards. We will have to pay the rest out of pocket.
People also ask us if Parker needs to even wear a diaper if he wears an ostomy bag to collect his stool in. The answer is Yes!. All the urine created by the bottles of Pediasure Parker drinks has to go into something. And we cloth diaper just in case you were wondering. MUCH cheaper than disposables. 
An ostomy bag looks simply like:
This is the pouch and what we use to close the pouch off with.
Each bag costs around $3.00 each. I make sure that I have an emergency stash of ostomy supplies stashed away too. Ostomy supplies simply aren’t something you can dash out for in the middle of the night if you happen to run out.
Using my template I draw the proper size opening for Parker’s stoma fit inside of the pouch. You want a properly fitting pouch, trust me.
I cut out the area not needed. Then I set the pouch aside.
This is my secret weapon. This is a wipe that helps prepare the area that the pouch will be sticking to. It adds extra sticky and helps to insure that the pouch will adhere better. Again, very important.
I then add the ’stoma-hesive’ to the wafer opening. All the light brown part or wafer is sticky, but you really need a better seal than just the sticky, thus the stoma-hesive.
Adhere the pouch over the stoma and make sure it seals well over all the area of skin that it needs to, close it off and viola! a new ostomy bag has been placed.
We usually change Parker’s bag every other day. It seems like we always hit a few days a month were because of how active Parker is or any number of other reasons, we wind up needing to put on a new bag two or three times a DAY. Talk about expensive! We empty his bag several times a day. Our insurance company claims that a bag should last for up to a week. We disagree and feel that because we are so incredibly neurotic……..uh, I mean attentive to the care of Parker’s stoma and ostomy bag we have not had any of the many issues that can arise if the proper care isn’t given.
We have Parker’s cloth diapers custom made with a rise high enough to cover and help protect his stoma and ostomy bag. Some of his diapers make him look like a little old man who wears his pants half way up to his armpits. hee,hee
The rest of the pictures are for your viewing pleasure, cause we happen to think that Parker is the cutest 2.5 year old EVER!
You can still play sports while wearing an ostomy bag.
If you were to take a peek at Parker’s tush it would look totally like any other teeny tush. You’d never know just by looking that there was anything different at all.
Parker’s colostomy is on his left hand (your right hand) side.
Wow. This has been our longest post ever! We’re ‘xhausted. Off to take a nap!
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The encouraging thing is that this is possibly reversible for him. It’s difficult to believe your insurance wouldn’t cover this procedure in its entirety.
I strongly dislike (I try not to use the word hate) your insurance company. Well, I’m not really fond of any insurance company because I have my issues.
On a lighter note, thank you so much for my Parky fix. Now I can go to bed.
I think my blog will have to begin a “get your Parky fix here” feature where I link when you have posted new photos. It would, of course, include any current fund raising info. 
*smooches* back at you.
It’s extremely hard to think of what justification your insurance company thinks it has in not covering the entirerty of that surgery.
Thanks for the Parker Pics. I enjoy seeing his face everyday. He is a cute little boy.
I agree with everyone else here, about the insurance company. I just don’t understand why they work that way. It just doesn’t make any sense.
I hope you guys have a great day.
Your insurance company is so evil – it makes me so mad.
Parker is such a wonderfully sweet adorable little boy. So glad to have gotten my Parker fix this a.m.
Cutest colostomy model I ever saw
Oh gosh – this all looks so complicated and overwhelming! God bless you and dear sweet Parker!!!!
I put up my post tonight about the concert. So sorry it was later tonight than I planned (I had wanted it up this afternoon.) I didn’t get enough computer time the last several days and I am soooo behind.
That was very educational. Little Mr. Parker is the sweetest little honey ever!
Hi, My son Mason is now almost 6 month’s old he has an imperforated anus. We get “BCMH” Bureau for Children with Medical Handicaps for him and they pay for everything .I don’t know where you live but they should help you I would ask his surgery doctor of head doctor about this. Plus we get medical card’s and my husband’s insurance we have no out of pocket money for him that’s a Blessing,,, I want to wish you all good luck!! I will pray for Parker.. Best Wishes.. ahh P.S where do you get the wipe’s from?
my son dakota was born with imperforate anus as well as needing a kidney transplant in the future. we also cath him every three hours. he is now 6 and in kindergarten. hang in there every year is a mile stone. dakota just had his 15th surgery and is great. i know howyou feel aboutthe insurance thing, my husband was actually fired from his job when dakota was 1. there reasoning was that my son’s medical bills was taking from there bonus checks that they recieved at the end of the year. the new insurance won’t hardly cover anything cause they call it pre exsisting.
I hope and pray all goes well for you and your little boy, I have a little boy who turns one tomorrow and he wears colostomy bags also.
He will need to have surgery done in the future and I pray that everything will be covered by insurance myself; they have told us that would be the case so I hope they don’t change their minds.
The bags diffinitely don’t stay on as well as they say they do, and I was told by the doctors that you should replace it every three days for cleanliness reasons.
I hope the best for you and your family.