She has had blood work done and ultrasounds. They had us bring her back in on Tuesday for another round of ultrasound and blood work. They say that her kidney's look good but they do see inflammation in the bladder around the area where the ureter's where reimplantated. But they weren't even sure if that is the cause. They basically said that they have never seen this before. The blood work did show a marked decline in her blood levels from the blood work they did a week ago. Which means that the blood loss is affecting her. And yes, it is a lot of blood. The levels aren't low enough to intervene yet but the decrease is worrisome.

And of course, she bleeds lots of blood when she pee's right up until we get to the doctors office and it clears up for a few hours.(till the next day actually). So weird. And of course when they test the urine it is still loaded with blood even tho it's not visible, but they haven't been able to see themselves how bad it is.

So at this point, they are going to go in with a scope next week and take a look. They have no idea what's going on and if they will even be able to locate the source of bleeding with the scope. they said unless it's actually bleeding right at that point in time, it's difficult to see. And even if it is, it's still not very easy to see. But it's our only option at this point. We decided to wait till next week because she is still recovering from her "virus" and has a cough and is generally run down. And beings this isn't "life threatening" at this point, we prefered to give her a chance to get a little stronger before putting her under. Of course if the blood intensifies again and starts showing clots again, we'll go right away.

--- In ureteral_reimplantation@yahoogroups.com, Christy <j2christy@...> wrote:
>
> Yeah a few hours after two weeks of bleeding is ridiculous. The
> concern I have is not a small amount of blood but it sounds like a
> considerable amount. That tells me that wound keeps getting reopened
> somehow or that the blood is from another source like her kidneys.
>
> Adults would take longer to heal. But a child should heal relatively
> quickly. Stay on top of them, I know how they make you feel, but you
> are right to be concerned. Blood in her urine is not normal for this
> length of time. Make sure she gets plenty of rest and lots of fluids
> and if the blood remains get in her to see someone else. My daughter
> has had resistant bacterial infections as well they are common in
> children who are consistently on antibiotics.
>
> Did you say that they have done any blood work recently?
>
> Sent from my iPhone
>
> On Nov 3, 2009, at 9:48 AM, "tallcherry@..." <tallcherry@...
> > wrote:
>
> > You are absolutely right about the "brewing" and that's clearly the
> > situation too. Last week when she developed a fever because the
> > bleeding had stopped (for only a few days as it turned out) her
> > doctor had me take her to her pediatrician to be seen and have her
> > urine checked again. When we got the results back from her
> > pediatrician she said that there was a different type of bacteria in
> > her urine but such a small amount of it, they wouldn't normally even
> > treat it or consider it a UTI. But she has now been on the
> > antibiotic for this bacteria (she finished up the other) for 4 days
> > and the bleeding is as bad as ever.
> >
> > She does have a bad cough now, so I do beleive the virus. Plus her
> > fever never spiked high thank god.
> >
> > When I talked to the nurse at the urologist this morning, she told
> > me to wait a few hours and see what happens with the blood and call
> > her back...... I was like huh? She's been bleeding for two weeks
> > basically straight and you think a few hours will make a difference?
> > So strange.
> >
> > Thanks for the support.
> >
> > --- In ureteral_reimplantation@yahoogroups.com, Christy
> > <j2christy@> wrote:
> > >
> > > Jeez! That is horrible:-(
> > >
> > > I would imagine a uti could cause the bleeding. Imagine having a
> > wound
> > > on your arm that gets infected. It could easily continue to bleed as
> > > the infection prevents it from healing properly.
> > > However two months of bleeding is well past the norm. I was told
> > three
> > > weeks was the longest anyone ever bled, but not to be alarmed
> > after a
> > > month.
> > >
> > > So two months is WELL past the norm. At this point I would see
> > another
> > > doc. I know u are already on your third but they clearly do not know
> > > what's going on. If she has a infection brewing then that means she
> > > doesn't have enough bacteria in her urine to be considered a full
> > > blown uti. She is either not healing for some reason or the blood is
> > > coming from her kidneys.
> > > You could take her to a nephrologist. I would think some blood
> > work is
> > > needed (actually they should have done blood work already) to see
> > > what's going on with her infection and whether she has a elevated
> > > white cell count and check her kidney function. If the blood work is
> > > fine I would perhaps move on to having her bladder scoped. It would
> > > allow them to view the surgical site and see if that could perhaps
> > be
> > > the source of her bleeding.
> > > Also, a virus sadly is not out of the question at this point. She is
> > > highly suceptible to infection right now, I am sure her resistance
> > is
> > > way down:-(
> > >
> > > Please forgive my typing. On my phone and it's really hard. Keep
> > us up
> > > on her condition.
> > >
> > >
> > >
> > > Sent from my iPhone
> > >
> > > On Nov 2, 2009, at 11:10 AM, "tallcherry@" <tallcherry@
> > > > wrote:
> > >
> > > > HI all. I wanted to jump back on and give an over view of my
> > > > daughter Macee's surgery. Just a bit of historical information.
> > > > Macee is 8 years old and has suffered from severe kidney
> > infections
> > > > since she has been about 3 and 1/2. Odd in her case to develop the
> > > > problem so late. She was never sick as a baby and never had any
> > > > problems. However, she was hit by a car just before she turned
> > three
> > > > and fractured her pelvic bones and in my opinion, this had
> > something
> > > > to do with the problem. After her first severe kidney infection
> > > > where she was hospitalized for ~10 days, she was seen by a
> > uroligist
> > > > and eventually diagnosed with grade 3 reflux on her left side. She
> > > > was placed on profolactic antibiotics but continued to have
> > > > infections. Eventually she was also diagnosed with a Grade 1 on
> > her
> > > > right side. When she was six years old the deflux procedure was
> > done
> > > > to correct the problem. She was sick again within six months.
> > > >
> > > > So in August, on our third doctor, Macee finally had the
> > > > reimplantation surgery done. She is 8 and has permanent scarring
> > to
> > > > her left kidney now. The surgery was done on August 11 and she
> > spent
> > > > three days in the hospital. The doctor did not place in stents and
> > > > her catheter was removed the morning following surgery. Her
> > surgery
> > > > took over 5 hours as the doctor had difficulties because of the
> > > > deflux procedure that was done prior. However, he was confident
> > that
> > > > the surgery was a success and he stated that because of the
> > shape of
> > > > her ureters and such, the deflux procedure never had a chance of
> > > > working (he wasn't the doctor that performed it).
> > > >
> > > > Her recovery was difficult. They had her on Morphine at first and
> > > > ditropan. They used suppositories for pain. Eventually switched
> > her
> > > > to oral tylenol with codeine. Which made her sick. We struggled
> > for
> > > > a day to get the pain medicine's down right. They eventually put
> > her
> > > > on dilatin iv pain meds instead of morphine which had her itching
> > > > like crazy. And oral was straight oxycodone since she couldn't
> > > > tolerate the codeine. Once they had that under control, she was
> > able
> > > > to get around a little better. She had a lot of difficulty getting
> > > > in and out of the bed and once the catheter was removed, it was a
> > > > nightmare. She had to go to the bathroom every 2 minutes and the
> > > > pain and burning was just awful for her. Not to mention the horror
> > > > of just getting in and out of the bed. Once we got her home she
> > > > actually seemed to slip some in her recovery, didn't want to get
> > up
> > > > and walk or move around. Stopped eating, began having spasms. She
> > > > had a difficult recovery to say the least. And the burning was
> > just
> > > > awful for her and took weeks to go away.
> > > >
> > > > When she went back for her post op ultrasound at 5 weeks post op,
> > > > they saw dilation and inflammation in the left kidney that
> > shouldn't
> > > > have been there when her bladder was full. The good news is that
> > is
> > > > dissapated when she emptied her bladder. So she still had some
> > > > recovering to do. Two days later, she began peeing blood again.
> > The
> > > > doctor said it was probably just old blood cleaning out of the
> > > > bladder and it went away in two or three days. Two weeks later she
> > > > peed blood again for a few days. This happened two or three times
> > > > with the doctor not being concerned at all.
> > > >
> > > > Well two weeks ago, now this is 2 1/2 months post op, she began
> > > > peeing large quantities of very red blood again. And it didn't
> > > > dissipate in a day or two. They redid the ultrasound and checked
> > her
> > > > blood and all seemed well. They did see a bacteria in her urine
> > and
> > > > said that she may have been brewing a UTI and this could have
> > caused
> > > > the bladder to bleed like that. Couple of days on the antibiotic,
> > > > and the bleeding subsided.
> > > >
> > > > Then it returned again a week later, large amounts of it and very
> > > > red (not dark like old blood). They said she had a small amount
> > of a
> > > > different bacteria in her urine and put her on a different
> > > > antibiotic. It finally stopped last night after 5 days of heavy
> > > > bleeding when she pees.
> > > >
> > > > I'm feeling very frustrated at this point. During all this she
> > also
> > > > developed a fever which has been chalked up to viral. It seems an
> > > > awful long time post op to still be peeing blood. She doesn't have
> > > > any pain with it which is good and I should note that she doesn't
> > > > have any symptoms of a UTI either.
> > > >
> > > > Has anyone else had these problems? Any ideas or suggestions?
> > > >
> > > >
> > >
> >
> >
>