medical issues, feeding and bowel.

[peaceful_mama]

ds3 will be 1 on mon.  He was born with imperforate anus.  This past summer, he started refusing solids.  What we did not realize is his overall appetite dropped.  (breastfed, output low normal)  He finally started to actually lose weight.  We had lots of tests and eventually spent a month in the hospital.  During that time, initially his belly would bloat w/ even 5 cc formula an hour.  He spent a week or more on TPN.  He had a colonoscopy.  Orange seeds (2) were found in his colon.  At the time they were found i was told it was normal for him to not pass those through a colostomy.  Just yesterday, i was told by same doc he SHOULD have been able to pass them.

Anyway so after a month in the hospital, we go home on 20 hours a day NJ feedings.  Things went bad at home.  After 2 weeks with various bouts of vomiting and bloating, we were readmitted.  What happened before and had happened again is his colon was huge and not moving stool.  He had surgery yesterday to put in a g-j tube and enlarge his colostomy.  I feel horrible thinking this but this huge adult size colostomy on tiny him looks like something out of a horror show  :(  i suppose i will get used to it.  :(  We don't know what's wrong really.  The other oddball thing is whenever he has been off feeds here at the hospital his potassium is low even though they are giving it via IV.

We know nothing and it is frustrating.  Anyine?

[AllieFaye]

I'm so sorry that you're going through this.  A year ago, I was going through a rough time with an NJ tube and my baby.  It gets better.  I understand.  I know.  It is so hard to have these kinds of problems.  Most people around you, even doctors and nurses - wait - especially doctors and nurses can't help you with the knowing nothing and the frustration.  They are only going to help with the straight up medical concerns, and this kind of thing is relatively rare.  They can't help you with the most difficult part, because they don't walk that path.  There are other helping professionals out there that may be a better fit for your needs, like case management or the like.  Navagation of all this is as important as the medical decisions.

I also have another child with a neurogenic bowel, and a complete bowel disability that is permanent.  From that, I can answer that you will get used to whatever the situation may be.  It will get better.  What horrifies other people (and by that I mean YOU, you home health nurses,) will become routine and familiar.  You will eventually know what's wrong and be able to explain it to others.  Your child will get his needs met and will thrive and have a wonderful life - because you are doing a great job.  You're reaching out, and you will find the help and the answers the family needs.

Big hugs.

[peaceful_mama]

off to google the words "neurogenic bowel"  nobody has been able to tell me yet what my child has for sure and how it will/won't affect him.  I am reassured to hear there are options for him other than wearing a bag the rest of his life.  One of the nurses told me about something, my pedi called it an "Ace procedure" where the person has some sort of opening into or near the bellybutton and basically gives themselves an enema while on the toilet as an alternative to diapers....something adult persons with spina bifida, quadri/periplegic individuals have I guess.  Hoping what ACTUALLY happens is this heals, is temporary, fixes itself and we do his repair and reconstruction and reversal and it all goes normally but it is nice to hear we have options other than him wearing a bag forever if it comes to that.  There's also ways they can do ostomies where the person can flush the ostomy at certain times rather than wearing a bag and having it uncontrollable.

[peaceful_mama]

he also had his feeding tube replaced two days later because it cracked and leaked.  grr.  but he's doing well now, had a decent bm this morning after contracting a tummy bug over the weekend and spending a day on no feeds just pedialyte and then only half strength elecare.  He's now on full strength elecare and doing ok again.

[peaceful_mama]

OK after a glance at what came up, 'neurogenic bowel' doesn't seem to fit him?  He doesn't have a nervous system or spinal cord issue that we are aware of.  He was tested at birth for a tethered cord and did not have that.  He also is pulling to stand, CAN roll but doesn't do it much, and is trying to crawl.  Yes, he's a year old, but he's also been very ill and attached to lots of things for a couple months now, where other babies were exploring and moving their little bodies.  He will catch up.  I just know he will...don't ask how, I just know.  He's my 4th and I just don't see anything that looks like it's more than lack of experience.

[AllieFaye]

Just to clarify - I didn't mean, "like your child, my son has a neurogenic bowel," I meant, "in addition to a child with a feeding tube, I have another child who has bowel disablitity."  While I can't say I've walked in exactly your shoes, between my two children, I understand what you've been through.  It's great that you're getting the help you need.

The big thing that struck me from you original post was the last sentence.  I have been there, and now we know.  We're getting the help we need, and I'm sure you will too.  I understand the reaching out, seeking some sort of guidance, when the professionals who are supposed to know just don't know.