I don't want to do it anymore — The Bump
Special Needs

I don't want to do it anymore

Do you think it's wrong to give up, or take a break from cathing?

Technically speaking, or I guess medically speaking we we are only a month out from her urethral dilation.  Which can last 6-12 months, depending.  She is peeing SO MUCH.  At first their was no change but 1-2 weeks in we started to notice.  She normally didn't go at all overnight, and took her about an hour after being up to go, now I have to change her in the middle of the night and her diapers are always SOAKED.

I know we just started working with this pediatric health psychologist and i'm going to talk to her about this on Thur and talk to the uro on 6/25.  Here's my reasoning behind it, and it's purely selfish.  When I go to pick P up from my gramma's she cries and runs away that she doesnt' want to go home, I haven't been able to get her to tell me why and normally I have to bribe her to get her to come home.  I cannot put a screaming kicking angry Peyton in the carseat, it's not physically possible.  This is the ONLY thing she has a tantrum like that about.

So yesterday I said it was time to go home and she looked at me and her eyes started to swell up with tears and she said, "mommy i don't want no catheter."  I about lost it.  That means that the reason why she hates coming home is bc she equates it with talking about and trying to cath which we have been trying to do everyday.  I tried a smaller size and downloaded her puzzle game she loves on the phone and did everything sneaky sneaky.  But as soon as I tried to open her girl parts up to do it she flipped.  I even told her they gave us smaller ones just for her 

I guess basically, I don't know why I am pushing this so hard if it's causing her this much pain and distress to where she actually HATES and is scared to be at home.  We have other options and maybe it's time to start looking into those and accepting that cathing is just not going to work for us.  Or just calm down about it a little bit and take a break?

Her kidneys are not at risk right now since we did the dilation procedure.  I just think i'm finally burnt out, and probably starting to take it personally that she thinks i'm hurting her when I'm just trying to help.  =( 

I feel like i'm being a big baby but honestly I'm the only one whose still even entertaining the idea that we can do it.  My gramma has said from the beginning that she CAN'T (and won't) do it.  H can do it, but he's having trouble with the holding her down screamy part and he's always at work.  

Looks like June is going to be a month of decisions!

DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


Re: I don't want to do it anymore

  • I won't/can't addres the "should you do it" part of the question because I am not in your shoes and do not understand the medical implications/options of cathing/not cathing.

    However, I can offer a hug.  What you are going through sucks. 

  • Big HUGS!!! I am so sorry that youre having to go through this, it is not fair! 

    If she's had the dilation & she's not retaining a bunch of urine after each void, then what is the purpose of cathing? Is it just to get her used to it for when the effects of the dilation wears off? If that's the case, then I'd definitely ask her uro about taking a break. I would carefully watch her intake vs output though, just in case she starts to retain again.

    I think that after working with the psychologist for a while & giving her back some control & understanding that it will be much easier. If it's safe to take a break while she's working with the psych, I think that would be beneficial.

    For what it's worth, I don't think you're being selfish in considering this at all! It's excruciating to have to put your kiddo thru something like that & I don't blame you one bit for seeking alternatives!

    I did respond to your post below regarding to the lidocaine & my history w/ neurogenic bladder, as well.  

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    Big HUGS!!! I am so sorry that youre having to go through this, it is not fair! 

    If she's had the dilation & she's not retaining a bunch of urine after each void, then what is the purpose of cathing? Is it just to get her used to it for when the effects of the dilation wears off? If that's the case, then I'd definitely ask her uro about taking a break. I would carefully watch her intake vs output though, just in case she starts to retain again.

    I think that after working with the psychologist for a while & giving her back some control & understanding that it will be much easier. If it's safe to take a break while she's working with the psych, I think that would be beneficial.

    For what it's worth, I don't think you're being selfish in considering this at all! It's excruciating to have to put your kiddo thru something like that & I don't blame you one bit for seeking alternatives!

    I did respond to your post below regarding to the lidocaine & my history w/ neurogenic bladder, as well.  

     

    Yes the purpose was to continue to try and cath because the dilation will wear off and with the increase that she has in output I don't even want to think about that.  I know the uro will probably agree that it's OK to take a break, I think i've been continuing to push it this whole time when they would have been OK with not since she had the procedure and that was to buy us time.  I'm just thinking into the future I dont want to skip a year and go bam! Hey guess what P you still have to do this!  I'd rather it be something we talk about/attempt everyday.  

    image-auntie-:

    I'm so, so sorry. This must be gut wrenching.

    What are your alternatives? Are they talking surgery? Can this be something to revisit later? Is the goal to avoid a stoma?

    It sounds like your grandmother not supporting you choices and that is just not her place. Is undermining your confidence as a parent? Is she laying on the sympathy so heavily that she's inadvertantly exacerbating this situation? There seems to be a theme of your DD losing it transitioning to home. I wonder if your DD's reaction has to do with her gramma's belief that this isn't going to happen. Kids have an almost 6th sense around such things.

    Can you get your therapist to talk with gramma and see if maybe she's complicating this?

    Our alternative options are mostly surgical but since P is getting older they are different than they were previously.  Like the vesicostomy which is reversible but is a stoma that continuously drains isn't really an option for an almost 3 year old, it's more an infant procedure that by this age they are getting rid of and moving on to something else.  I wouldn't say the goal is to avoid a stoma, personally if we do something like the mitrofanoff (which can be through the belly button) I want her to be part of that decision but if she isn't cooperating we may have to consider it more.  I think even the uro would push to hold off on that because it can be a complicated surgery.  We could do the dilation again after this one but that means another year in diapers (because of the incontinence it causes and the MASSIVE amounts of pee) which I am finding able to stomach better than the thought of trying to keep attempting to do this every.day.  

    I don't think she's undermining my confidence she's just older and isn't comfortable doing it.  And she doesn't' want to take part in anything that causes her pain, which I get, lucky that some people have a choice there though & I don't lol.  She's also very religious and is very much taking the "god will heal her" road.  Sigh.

    I really think it boils down to that we only try to cath her at home and at a dr. so my grammas house is her safe place.

     

     

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


  • It sounds like you both desperately need a break from the cath ing.  It sounds like the dilation affords you a temporary respite, so by all means, take it.  I can understand your wanting to make it part of the routine.  There is merit to that.  When the effects of the previous dilation wear off, you and your husband can reevaluate whether or not you want to go back to cath ing or look into alternatives.  Hugs!

    As a side note, my son had a stoma for 8 weeks.  It didn't seem to bother him much, and changing the bag wasn't a big deal.  My biggest complaint about it was not being able to give him a real bath and that whenever he got sweaty, the adhesive would start to fail.

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