Sunday, April 3, 2011

Things that are sad and confusing, for $500, Alex.

I wasn't sure if I wanted to talk about this or not. I wasn't sure for a couple of reasons. First, right now Roman isn't going to care at all what I write on the internet-but one day he will. Second, emotionally, it's one of those "punch to the gut, help me I can't breathe" kind of feelings. And last, because in two years of life this is the first we've had to discuss or concern ourselves with this.... with cathing.

There are some parents whose children don't have shunts, Roman does.
There are some parents whose children have had few surgeries, Roman has had 10.
There are some parents whose children can walk, Roman doesn't...yet!
There are some parents whose children have no chiari symptoms, Roman does.

I'm not saying cathing is the worst thing in the world, I'm not even saying it's the worst thing in the neighborhood. I have come to know and trust a great many women who cath their kids. If they tell me (and they do) that cathing is no big deal-I believe them 100%.

However, we have gone so long with it just being a "non-issue" and kind of counting ourselves lucky that it hasn't been a part of our Spina Bifida journey. In fact, we even fooled ourselves into saying, "If it hasn't happened by now, I think we're in the clear." 
So it should come to no surprise that we were wrong again and that Spina Bifida has, like a big jerk-punched us in the gut...again. 

We got the news Monday that Roman's bladder isn't doing it's job correctly. I could bore and confuse you with the medical jargon, but the honest truth is that I still don't completely understand it enough to explain it with much confidence. Basically, he has a high pressure bladder. It didn't skip him. Like so many, many, many of his rockstar buddies-he will eventually need to be cathed.

Right now, his bladder is not doing it's job, but as far as we know his kidneys are. We'll know more with an upcoming renal ultrasound. Pending the results of that our game plan is to wait, and keep an eye on things. However, if his kidneys are being stressed at all, we'll start cathing right away. 

I believe every one of us has our "nightmare." The thing we don't want to deal with, the thing we dread, the thing we were hoping to avoid. It doesn't matter how many kids you have, or if they have a scar on their back or not. We all have the nightmare. 
In regards to Roman, this is mine. This is my, "please God, no." nightmare. Not because it's the worst thing that could happen, because it's not. But, because I allowed myself to get confident and a little cocky in the face of a condition that knows how to throw punches, and throw them hard. 
I was thinking, since so many people want to call it, "spinal bifida" anyway why not just change the name to "take your mom down a peg-ifida" 

Roman, I hope that by the time you're old enough to read this it won't matter, it won't mean anything to you. In fact, I hope it's not even stored in your memory bank.  Because I hope that by then medical science will have stepped up to the plate and cured at least this one pesky little side effect of "take your mom down a peg-ifida." 

I love every bit of you. 

12 comments:

  1. {{HUGS}} I can't imagine what your going though, I can't even pretend to imagine, but I do know a little about what Roman has gone through and will go through - I am 40 years old and have SPINA BIFIDA, I am a mother of 4 (yes 4 little precious bits of me to go on when I'm not here any longer) and all I can say is I admire you and empathize all at the same time. I wish for you and Roman every happiness, through the tough and the bad your little man will come out stronger and more courageous than you can ever imagine - and I thank you for writing so opening and honestly about what your going through and your feelings. Roman one day will appreciate that more than anything.

    I don't know how to send my email address to you without sharing it with the world, but if you can work out a way for that to happen, I would love to "chat" to you privately at some point, if you want.

    Anyway, take care,
    Chelle xx

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  2. take care ~~~ visiting here with a smile ~~~

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  3. Erica,
    Once again, there are tears in my coffee while reading your blog. You and your husband have done such an incredible job with all of Roman's setbacks that "take your mom down a peg-ifida" have thrown at you. I pray for a miracle that the cath thing doesn't happen for all of your sakes, but if it does, I know you will courageously learn & accept it and somehow add your twist of humor to it. Roman is so lucky to have a wonderful, strong mother like you to look out for him. I think he will LOVE and cherish all your blogs when he's older. You've educated yourself and all of us on such a personal level~I never learned all this about "spina bifida" in nursing school. I always look forward to reading your blogs.

    Take care~Lori

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  4. You hit the "cathing" fear on the head here, Erica.

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  5. I totally understand. This is my big fear too, as silly as it seems when "everyone else is doing it." I've come to realize that there are very, very few people with SB who aren't cathed, and most of those people are incontinent. So whether they're cathing for their bladder/kidney health or just for continence, they're all doing it, and it's nearly unavoidable. :( Hoping for the best on the renal ultrasound.

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  6. I'm right there with you on this one. We've dodged the "cathing bullet" for awhile now, and though I know it's probably inevitable, it's just something I'm not ready to wrap my brain around...yet. Hopefully when our time comes, I'll be ready. Big Hugs Potter.

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  7. Enjoyed your post. Our sweet baby Palmer is just 10 weeks so we're so new to all of this. Roman is absolutely adorable and I also think he will LOVE the blog. Thanks for sharing.
    Angie

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  8. I know EXACTLY how you feel. In fact I fooled myself for about 4 1/2 years. And it was bliss! Until it wasn't. :) I even thought maybe tethered cord surgery would help fix everything in that department - since, afterall, his bladder was fine for 3 years. Something had to happen to make the pressure in his bladder go from good to bad right? Well we are 6 weeks post-op from TC surgery and Noah can not pee. We have been cathing for about 93 days and 126 minutes, but who's counting?
    If you want to hear how fear number two came to pass as well (cone enema) I'll share. We are 8 days into doing that. Sigh.
    SB does offer up a lot of sucker punches doesn't it? SO glad I found your blog. :)
    -Julie
    Mom to Sabelle (6) and Noah (4 1/2, SB, L3/4, shunt, AFOs, walks with forearm crutches, Detrol, caths, Etc, etc, etc)

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  9. As usual, I am smiling through tears as I read your post. But I also know that you are amazingly strong, and that Roman has a wonderful Mama and advocate in you. You will prevail, regardless of the hurdles put before you. Many prayers being said for you, as you anticipate the birth of Sully, and embrace (reluctantly even) yet another mountain to climb in this world of SB. :) (((hugs))))

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  10. Big Hugs Erica!
    I know how you feel about that SB tick list.... Has this, has this, has this. Isn't there something that you can just put a big whole X through? Isn't there something that can just be skipped?!
    Big Big Hugs, you have so much on your plate right now, I hope you can delay this one for longer!

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  11. gosh I am soooooo there with you. right there. This was one of the things that even while I was pregnant, I stressed about. I don't know why. Like you said, its just one of those things for me that I'm soooo not comfortable with. We've gotten almost two years out of doing this but like many, I feel the time ticking, I just have one of those feelings that it will be our time too, that we won't escape it. Its so silly when you think about it, we'll do whatever our child needs of us ofcourse, you just hope to get a "free" card in something SB related and this is one of mine. Thanks for writing this!!!!

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  12. Friend,
    We are right around the corner from this very same thing so I'm crying with you. I too have thought YEAH! We kicked SB butt there... but no, it has kicked ours again. We made it to a year--- no shunt!!! Only to have him need one at 13 mos. and now the bladder infections are starting and other signs that point to him not functioning there. We see the uro. in May and I just know what the news will be. We can do it though!!! We've done so many things that we never imagined we would have done. We're Mommies and we do have rock-stars. Love you friend!!!!

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