Grrr

Braces and Adhesive Allergy!

Owen is not wearing braces today (actually since Saturday (except for at church because Owen INSISTED). Why?

Because he is having a terrible allergic reaction to an adhesive that was used to modify his braces last week.  It is taking forever to heal up.

It all started when the metal on the knee joint of his KAFO rubbed the inside of his knee raw a few weeks ago.   I made an appointment to get his braces adjusted.  We're probably only a month or so away from getting new ones. 

Our amazing orthotist Chris knew just what to do and we were off.  he added a pad to the knee joint and some foam inside the thigh cuff to keep his leg in the right position and help with the fact that it's too loose again. (yes, I just can't seem to fatten the kid up!)

That was Monday after noon.  By Monday night his leg had a full-blown, pimply, hot, itchy rash.  Not awesome.

Long story short, I sent some pics to Chris on Friday and he called me back at 8PM (bless his heart) and said he could tell right away it was a reaction to the adhesive he used to add the foam.

This doesn't surprise me since Owen breaks out even from the latex-free tape we use to hold his catheters in over night and on the potty. He suggested I get some adhesive remover and wash it up really well and see what happens.  

Eric suggested we leave it off Saturday just to let the leg heal up a bit.  By bedtime it still looked awful. Sunday Owen freaked out about the prospect of not being able to walk at church, so we let him wear them to church and took them off right after—the rash was worse!

Here we are today, brace-less.  He's handling it well for the most part since we're at home.  I know it frustrates him.  It is so obvious that he sees those braces as a means to an end.  It's almost as if they are an extension of himself.  He is not able to do the things he wants without him.  

I love this.  And I hate this at the same time.

It was nice, however to enjoy some brace-free cuddles this weekend.  Man, those things can really hurt ya!

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"Don't cath Monti! Don't hurt Monti!!!  Do MACE instead!!!"

That has been Owen's montra, all whilst kicking and wiggling and holding arms crossed over his belly, every time it's time to cath for the last several weeks (maybe a little over a month actually.)

"Monti," his bladder stoma, is a mess.  Scar tissue, tightening, granulation tissue.  Drives me nuts.  

If we tape in a 12 french catheter over night it seems to be better in the morning (more open), but by evening it is tight again.  Sometimes it appears completely closed up and I just have to believe it will allow the catheter to pass.   We've even gotten blood on occasion—totally superficial from the tight skin, but still, not cool.  

It is so difficult to try and cath him when he is doing everything he can to stop you.  And I don't blame him.  It is hard to discipline him for this behavior.  

At first he was getting very angry at US for hurting HIM.  I think we have almost successfully gotten him to realize it is not US hurting him, but MONTI.  

"We can be angry at Monti, but not mom and dad.  We don't like it that monti hurts either.  We can go see Dr. Kaeffer and ask him to help Monti feel better.  We can stretch Monti with the big catheter and help him get bigger."   

Owen's prayers at supper often involve asking that "Monti grow up soon."

We have an appointment Wednesday and finally THIS weekend Monti seems to have turned a corner.  We left the 12 fr in for several days actually, and that seemed to help a lot to dilate the stoma.  

Owen exclaimed this morning after cathing "only hurt a little bit",  "Monti grew up!"

I am so thankful.  God does answer those child-like prayers.

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Can't have it both ways

As much as I hate that Monti is too tight, MACE has the opposite problem.

Owen's MACE stoma has been ridiculously big from day 1.  Literally a piece of Owen's intestine the size of a dime is bubbled up (looks like half a marble) where his belly button used to be.  It looks horrible.  Bright red.  It oozes constantly.  It is intestine after all.  It bleeds easily.   It is difficult to keep a bandage on.

One day after a bath Owen was drying off on the bathroom floor and when I came back in there was blood everywhere.  He had accidentally scratched the MACE stoma with his towel and lacerated it a little.  After I realized where the blood was coming from I was able to deal with it.

I realized later how easily this happened because after all you don't have sensation in your intestines!

For some reason, the MACE stoma has been the part of all this I've disliked the most, until recently when Monti stoma started having problems too.  I absolutely hate that we have to put a bandage on Owen's stomach everyday just so it won't ruin his shirts.  (You have no idea how many bloody, mucus-y shirts I've had to try to get clean.)  For some reason, it's not the cathing or the bowel program or the braces that I feel like infringe on his childhood...for some reason it's that dang bandage on his belly button.  It just seems over the top to me.  It wasn't supposed to be this way.  

I have wanted to have the MACE stoma revised for months now, though we have to wait 9 months to a year.  But now with Monti's tightness, I don't know if I'd just be trading one problem for another.

I wish MACE was smaller and Monti was bigger.  

I anticipate Kaeffer reminding me "you can't have it both ways!"  We'll see.  Something has to change.  

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For all you "guinea pig watchers" out there [wink wink]

We are the guinea pigs so to speak for several of our friends yet to venture down this road of bowel and bladders surgery.

Even after reading all this.... the answer is still, YES!  I would still do it again.  It has been amazing having Owen able to stay dry.  Able to be off Ditropan.  Able to wear underware.  It has (even with the tightness) been so much easier and quicker to cath.  

Are there days I wish for Owen's smooth little belly and belly button back, sure, but I also know the scars will fade with time. They always do.

There are days I'm frustrated with poopy accidents, especially accidents in underware!  But I know it is just a matter of trial and error and time.  When it works, it works awesome.  

Although there have been some hiccups and difficulties in this adjusting to this new normal, I am confident we will work it out.  

Dr. Kaeffer better have lots of time for us on Wednesday, this mama has lots to discuss!

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Lastly, a Thank You

I meant to post this last week, but never got to it with the holiday.

The weekend before Thanksgiving Owen had is first overnight away from us since surgery!  

This was a big deal.  A difficult step of letting go for me especially. This whole process (MACE and Monti) is still very new to me in many ways.  

Eric's parents wanted to have Owen stay for the weekend.  They had had each of the other kids over this summer one at a time.  It was Owen's turn.  He stayed 2 nights!

I am so thankful Eric's mom was willing to learn all about his new care needs, and practice, and reassure this over-anxious mama.  She did great and everything went fine! 

Thank you, Connie!

In a few weeks he'll stay the night at my parents' house while Eric and I attend Christmas parties.

I am so so grateful that we have family that is not afraid to learn, to try, to jump in and do.  It means so much to us that Owen is able to have those times away from us just like the other kids and experience special times with grandparents.  I know everyone in our shoes is not that fortunate.