Nothing is ever cut/dry for us! Opinions wanted. **update** — The Bump
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Nothing is ever cut/dry for us! Opinions wanted. **update**

M had her urodynamic study today, The set up was quite different than any P has had, and they didn't do the video portion (They said since she had a VCUG not long ago they really just needed the pressures, etc)

The NP called the DR on the phone and asked him to come in, they told me to get her dressed and they would talk to me.  They never really even explained to me what it showed in depth.  But, not good, I was able to get that much from it.  

She said she couldn't fill her up past 25cc but her VCUG they got 150cc.  Also she was having constant bladder spasms/pressures I guess.  I'm not used to just the readout without the pictures and they weren't sure it was accurate so didn't go into much depth.

The Dr. at the practice we have been going to is leaving and the new dr won't be there until November.  We are supposed to decide on her kidney surgery in July..but they won't have a uro surgeon!

The dr. said it could have been a fluke, or machine error, or she has a neurogenic bladder like P.  He said to discuss repeated Urodynamic after her next kidney ultrasound (July 9th).

Here's where i'm insanely confused.  Kids don't just 'have' neurogenic bladders this would mean their is something wrong with her spinal cord.  I do not do well with the 'wait and see' approach.   IF it is a spinal cord problem, the longer it goes without being fixed the more damage is done (Exhibit A: Peyton).

I'm going to email the NP, and tell her i'm not comfortable with the wait and see approach and could we maybe repeat it in a couple of weeks, instead of months.

I mean seriously, why can't anything just ever be easy/normal for us.

I could get a 2nd opinion but I probably wouldn't get in for the appt until July anyway and I'd need to get records, etc.  

When I saw her face and that she picked up the phone to call the dr. I literally almost puked everywhere!  My nerves are shot!

 

**update**

Uro sent me an email a little while ago.  I called UVA and their first appt was late July which really wasn't useful to us with the timeframe being our main issue.

She said she talked to both neurosurgeons and they are confident she does not have a tethered cord.  She agreed we could repeat the test sooner and understood where I was coming from with not being comfortable with the wait and see approach.  So we are going to repeat urodynamic on 6/7, H will be off so hopefully he can help (i'm sure he won't be happy that i've signed him up for this lol)

So I asked her why she would have a neurogenic bladder without spinal involvement and she said it can be congenital or called Hinmans syndrome.  So I guess I feel a little better knowing that spinal surgery is wayyyyy down on the list of things she may need.  The rest of the stuff treatment wise (intermittent cathing) is what we are already dealing with, with Peyton, so making it x2 won't really change a whole lot.

Deep Breath. 

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: Nothing is ever cut/dry for us! Opinions wanted. **update**

  • Oh wow, I'm so sorry to hear this :( It seems like you can never catch a break! I think you did the right thing letting them know you didn't want to wait. Is there any way you can go ahead and get them to see you again in a couple weeks and make an appointment with someone else for a second opinion? 
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  • I'm sorry, that must be so frustrating. I know I would not want to wait around either. Is it possible for the doc to send the records to another uro and have them review it without you having to get an appointment? Or could the doc present her case to some of his colleagues  during a department meeting?
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  • It is great that your doctor communicated with you and now there is a plan of action. Plans are awesome! Good Luck on the 7th!
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  • image bubba2b:
    A  repeat makes total sense. Are these fantastic urologists (pedi)? Do you need a 2nd opnion. Just curious...

    Well the uro himself is pretty good I guess, but he's leaving next week.  Personality wise he's really blah and we usually see the NP.  She's very good at explaining things and easy to reach (now that I have her email..lol) 

    BUT you know she's not a dr. and both girls are going to need surgical interventions within the next few years (We have to decide on M's kidney surgery in July).  The new dr won't be there until November and he is new new.  I'm not sure how I feel about that in relation to surgeries, etc.  

    I'm for the most part comfortable with them, their are plenty of other pedi uro's in Virginia but none that are easily accessible or easy to get into.   I peaced out on UVA when we saw the dr. for all of 30 seconds and he told me we had to start cathing, etc.  I know I had a 'kill the messenger' approach and I recognize that, I was just caught so off guard and didn't particularly like how they take a textbook approach to everything, being that neither of our kids are normal in their abnormalities. If that makes sense.  

    The urodynamic study was done differently than any P has ever had either and only the NP was in the room running it so I think that's the only thing that has me a little iffy on it.  She didn't do the video part either, which we normally get as well with P. 

    Sigh. 

    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


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