Not the news I was expecting (urology appt)

realisticdreams · February 2012

We had our 2nd opinion urology appt. today at UVA. I sought out a 2nd opinion because her urodynamic results (see siggy) were bad and initially they wanted to start cathing right away, then 6 months then when we went for a 2month follow up they didn't want to do anything (including kidney ultrasound) for another year. That made me nervous that I might not be doing everything I could/should be doing for her.

So we had the 2nd opinion today. The urodynamic study was awful, she screamed mommy it's hurting me. During the actual test I did get her to calm down and talk to me though (better results).

All I know is that she definitively has a neurogenic bladder and she still has the bladder/sphincter discoordination. She also has reflux now. Her last study was almost the end of September and she had no reflux. So the fact that in 5 months she's developed reflux (I didn't ask what grade, because now that I think about it, they do have numbers) it means the pressures in her bladder are staying too high.

We have to start cathing, every 4 hours while awake.

I don't know what i'm going to do. This means I can no longer work, I can't go back to school...we live almost an hour from town, so I can't just run to do something for fear I won't make it back in time.

The only other person who takes care of her is my gramma (who is upper 70's) and she's not comfortable doing it. So what happens when i'm sick, if i'm in the hospital, if Morgan's in the hospital. My mind is spinning.

Plus, this kid won't even let you WIPE her vagina off with a diaper wipe, I do NOT know how we are going to cath, especially me, by myself.

I was just not prepared for anything other than proactive cathing, this is, cath now or she's going to wind up with kidney damage.

It really really really just SUCKS!

ToastieSimons · February 2012

oh that sounds like it's going to be so difficult. Would it be better to discuss having a permanent foley put in for the meantime? I mean every 4 hours is crazy and I would think it's not something that you could just do anywhere (such as restaurant bathrooms etc) because of sterility. I also wonder if getting cathed every 4 hours is going to be really traumatic? I've had it done a couple times after surgery and it was REALLY uncomfortable and I'm an adult and I know what was happening.

I'm sorry you got such difficult news. I hope you figure out a solution that makes things easier.

realisticdreams · February 2012

ToastieSimons:
oh that sounds like it's going to be so difficult. Would it be better to discuss having a permanent foley put in for the meantime? I mean every 4 hours is crazy and I would think it's not something that you could just do anywhere (such as restaurant bathrooms etc) because of sterility. I also wonder if getting cathed every 4 hours is going to be really traumatic? I've had it done a couple times after surgery and it was REALLY uncomfortable and I'm an adult and I know what was happening.
I'm sorry you got such difficult news. I hope you figure out a solution that makes things easier.

I didn't ask about a foley..I guess that's an option I can research and ask when we go back for training/to pick up supplies. I wanted a natural childbirth just because I was afraid to be cathed (how stupid was that?) She has been cathed on multiple occasions. I think their is a reason they do CIC (clean intermittent cathing) vs a foley, maybe infection? I'm not sure. I'm sure it's going to be traumatic, she is already traumatized down there from everything she's had done.

I don't know if their are also procedures (re-routing, etc) of anatomy that could be beneficial as well. I wouldn't want to make a decision on something like that for her though, that would be her choice.

JenGK · February 2012

Have you looked at getting Virginia's EDCD waiver? Z just qualified, and it provides you with money to hire personal care providers and to get respite care. They do an interview that focuses on the level of care needed and whether the child can perform activities of daily life without assistance (it is mainly aimed at the elderly, so some of the questions make no sense for kids, but in a weird way it helps, because the answer is no, s/he can't do it). One the financial front, they only look at the child's assets -- not yours -- so unless she has a trust fund, she'd qualify. PM me if you wnat more details.

realisticdreams · February 2012

JenGK:
Have you looked at getting Virginia's EDCD waiver? Z just qualified, and it provides you with money to hire personal care providers and to get respite care. They do an interview that focuses on the level of care needed and whether the child can perform activities of daily life without assistance (it is mainly aimed at the elderly, so some of the questions make no sense for kids, but in a weird way it helps, because the answer is no, s/he can't do it). One the financial front, they only look at the child's assets -- not yours -- so unless she has a trust fund, she'd qualify. PM me if you wnat more details.

We have the ECDC waiver (we got it in July) but if the child has a nursing need it affects something. I will have to read the book and DH is asleep so i don't want to wake him up looking for it.

Right now my grandma is the provider, because she won't hardly stay with her much less a stranger. I know we can keep the waiver IF the provider isn't doing any nursing needs. Which she can't do anyway. I don't know. This just really sucks and now i'm going "what if they are wrong, what if the results are wrong"...yeah i'm getting all kinds of confused inside my head.

MaxandRuby · February 2012

I am so sorry that you got unexpected and bad news. Everything I was thinking has already been mentioned. I have some virtual hugs for you if you need them!

MummyGruetzie · February 2012

realisticdreams:
JenGK:
Have you looked at getting Virginia's EDCD waiver? Z just qualified, and it provides you with money to hire personal care providers and to get respite care. They do an interview that focuses on the level of care needed and whether the child can perform activities of daily life without assistance (it is mainly aimed at the elderly, so some of the questions make no sense for kids, but in a weird way it helps, because the answer is no, s/he can't do it). One the financial front, they only look at the child's assets -- not yours -- so unless she has a trust fund, she'd qualify. PM me if you wnat more details.
We have the ECDC waiver (we got it in July) but if the child has a nursing need it affects something. I will have to read the book and DH is asleep so i don't want to wake him up looking for it.
Right now my grandma is the provider, because she won't hardly stay with her much less a stranger. I know we can keep the waiver IF the provider isn't doing any nursing needs. Which she can't do anyway. I don't know. This just really sucks and now i'm going "what if they are wrong, what if the results are wrong"...yeah i'm getting all kinds of confused inside my head.

If there are there are nursing needs beyond ADLs, you will need to do EPSDT. There is no wait list for this. Just the hassle of finding a company that's easy to work with and a nurse. The agencies sometimes have waitlists for the nurses depending on what level you need-LPN, RN, etc. Beyond EPSDT, there's also the tech waiver. You pretty much need a trach or vent for that. Its interesting-we actually qualified for more hours with the EPSDT than we did when DD had her trach and had to do the Tech. EPSDT is pretty good hours wise. They'll also do respite hours in addition to your "nursing". Your hospital social worker should be able to set you up with the EPSDT information.

realisticdreams · February 2012

MummyGruetzie:
realisticdreams:
JenGK:
Have you looked at getting Virginia's EDCD waiver? Z just qualified, and it provides you with money to hire personal care providers and to get respite care. They do an interview that focuses on the level of care needed and whether the child can perform activities of daily life without assistance (it is mainly aimed at the elderly, so some of the questions make no sense for kids, but in a weird way it helps, because the answer is no, s/he can't do it). One the financial front, they only look at the child's assets -- not yours -- so unless she has a trust fund, she'd qualify. PM me if you wnat more details.
We have the ECDC waiver (we got it in July) but if the child has a nursing need it affects something. I will have to read the book and DH is asleep so i don't want to wake him up looking for it.
Right now my grandma is the provider, because she won't hardly stay with her much less a stranger. I know we can keep the waiver IF the provider isn't doing any nursing needs. Which she can't do anyway. I don't know. This just really sucks and now i'm going "what if they are wrong, what if the results are wrong"...yeah i'm getting all kinds of confused inside my head.
If there are there are nursing needs beyond ADLs, you will need to do EPSDT. There is no wait list for this. Just the hassle of finding a company that's easy to work with and a nurse. The agencies sometimes have waitlists for the nurses depending on what level you need-LPN, RN, etc. Beyond EPSDT, there's also the tech waiver. You pretty much need a trach or vent for that. Its interesting-we actually qualified for more hours with the EPSDT than we did when DD had her trach and had to do the Tech. EPSDT is pretty good hours wise. They'll also do respite hours in addition to your "nursing". Your hospital social worker should be able to set you up with the EPSDT information.

So we would have to transfer to the EPSDT? Does that include full medicaid coverage? We don't have a hospital case worker =(

bitemebigtime · February 2012

Hi, I am an old lurker of this board- since we got our dx I frequent a different support group-

Anyway, did they mention botox treatments to you? My daughter is 12 months with a genetic deletion. She has grade 1 and 3 kidney reflux and external sphincter dyssynergia. She strains and grunts when she urinates, like she is having a bowel movement. THey are going to keep an eye on her for now, hopefully if she progresses enough she can outgrow the condition. However wIth her frequent seizures this is unlikely- Our urologist recommended a procedure where they will inject the sphincter with botox to relax it, and sometimes as the botox wears off the bladder will re-train itself properly.

realisticdreams · February 2012

bitemebigtime:
Hi, I am an old lurker of this board- since we got our dx I frequent a different support group-
Anyway, did they mention botox treatments to you? My daughter is 12 months with a genetic deletion. She has grade 1 and 3 kidney reflux and external sphincter dyssynergia. She strains and grunts when she urinates, like she is having a bowel movement. THey are going to keep an eye on her for now, hopefully if she progresses enough she can outgrow the condition. However wIth her frequent seizures this is unlikely- Our urologist recommended a procedure where they will inject the sphincter with botox to relax it, and sometimes as the botox wears off the bladder will re-train itself properly.

No, they didn't but I read a little bit about it. I'm going back to UVA tomorrow to pick up CD's of her procedures and we are going to see the uro who we saw at the spina bifida clinic next Friday. They talked to me on the phone for over 30 minutes and really made me feel comfortable with everything. They said that if we do HAVE to cath they won't use the ditropan which has nasty side effects and that we possibly could cath less than every 4 hours. Basically I know unless it's 100% necessary they won't have us cath, because they know how Peyton is. If we do HAVE to and she won't let us she discussed surgical augmentation procedures that are last resort.

I will ask about botox friday though do you think it's insurance approved?

bitemebigtime · February 2012

Good question. I will ask next time I am there- we have to get a 24 cath done for collection to check she is tolerating her topamax.

Our Dr specialty is neuro-uriology (had no idea this existed) and he is very knowledgeable about neuro/cognative disorders and the effects on the system. He said he was one of the first to start doing the procedure back in the 90's.

I too was devastated after our last appointment. She has so much stuff going on and now you are telling me she might loose function of her bladder?!? Really? Anyhow he told me right now to focus on her constipation issues (he wants me adding in 250ml of free water per day!) and we will repeat her VCUG in June. Its good they made you feel comfortable with everything. And if it's 100% necessary, then hey- you have to do whats best for her, right?

Let me know what you find out:)

bitemebigtime · February 2012

ps: my daughter is Morgan too!

realisticdreams · February 2012

bitemebigtime:
Good question. I will ask next time I am there- we have to get a 24 cath done for collection to check she is tolerating her topamax.
Our Dr specialty is neuro-uriology (had no idea this existed) and he is very knowledgeable about neuro/cognative disorders and the effects on the system. He said he was one of the first to start doing the procedure back in the 90's.
I too was devastated after our last appointment. She has so much stuff going on and now you are telling me she might loose function of her bladder?!? Really? Anyhow he told me right now to focus on her constipation issues (he wants me adding in 250ml of free water per day!) and we will repeat her VCUG in June. Its good they made you feel comfortable with everything. And if it's 100% necessary, then hey- you have to do whats best for her, right?
Let me know what you find out:)

We need to get a handle on Peyton's constipation as well so she's back on daily miralax but 1/2 the dose in order to avoid diarrhea.

My youngest's name is Morgan

I'm glad I went to UVA for the 2nd opinion because otherwise we wouldn't of known she had developed the stage 3 reflux in only 4 months BUT the way they handled everything was just...not a good approach. They treat everything by textbook scenarios, when children are not text books, they are individuals.

I did not know that specialty existed...interesting lol. We see neurology, neurosurgery and urology (plus about a doze others! ugh)

Want a personalized experience?

Not the news I was expecting (urology appt)

Re: Not the news I was expecting (urology appt)

Choose Another Board

Search Boards