I'm so upset

We took Izzie to the dr today for a routine repeat lead check. Her last two levels had shown a significant decrease and we were in the safety zone. BUT they wanted to keep checking every 6 months to make sure things stayed okay.

I was NOT worried about this test.


I guess I should have been.


We are up 3 points from the last time and back over the "safety" zone.


I just don't even know what to think.

Good Kidney News!

I spoke to our urology specialty nurse yesterday to schedule Caity's future appts/tests and also to double check on what we need to do for Calleigh, since some of Caity's issues are hereditary (but have thankfully skipped Izzie)

Anyways -- While on the phone, she gave me some good news! Dr. Reddy had analyzed the latest results from our urodynamics test. AND There was great improvement made. Her bladder capacity has DOUBLED since we started the drugs. Her output volume has doubled as well (which means less urine to back up into the kidneys)

This is awesome news! Of course She still has kidney damage, she still has an abnormal bladder -- but to see results of any kind is AWESOME.

We'll be doing a kidney/bladder U/S soon to make sure no further damage has occurred since the last one.


As far as Calleigh goes, we will do an u/s at around 6 weeks to check her bladder/kidneys. BUT if all looks well between birth and 1 year, we will hold off on the VCUG until 1 year. WHEW. This makes me so happy!

OB Appt. Update

28(ish) weeks!

We are up to 134 lbs! (so a total of 19 lbs gained so far)


I am measuring right on at 28 weeks. (Weird to me because I usually measure 2 weeks bigger -- but no complaints here)

Baby's HR was in the 150's again (even after the glucola)


I PASSED the GTT test -- YAY for no GD.

Next appt. in 3 weeks, and they'll probably do an u/s to check my cervix length to make sure I'm not showing any signs of another premature labor!


My Goal -- a 6lb baby (Both the older girls were 5lbr's.) Preferably a 37 weeker or later -- but I suppose I can't be too picky.

All in all things are looking good. No PUPPPs this time (thank goodness) and so far no contractions. Of course this pelvic pressure is enough to make me nuts. Miss Calleigh has decided she likes to stay deep down low.

Thank you walmart lady

Wow. Judge much?

I transferred Caity’s prescriptions to the walmart pharmacy close to us. It’s easier to get them there than traveling to the other side of town. OR dealing with Aetna’s mail order place further.

So when I went to pick them up, first the pharmacist wants to do a consult. A consult for drugs that my daughter has been taking for oh 9 months or so. OK.

Then she tells me, that she wanted to be sure the drug was correct, because that drug isn’t commonly used in A) Females, and B) Children.

So I inform her that yes it’s the right drug, yes it’s the right dose, and yes I know there are possible side effects. I also informed her that I also know that IF we do not go with this experimental drug treatment, we are looking at at least one kidney transplant. And that IMO as Caity’s mother, the risks of the drug are far less than the risks of needing a new kidney and having to wait for it OR further damage to the currently “good” kidney.

This isn’t my first encounter like this, but it was far more annoying this week. Maybe it’s the pregnancy hormones, but until you’ve been in the position to make a tough choice such as this, you shouldn’t make assumptions or say Well I would do this.

Yes, there are risks; yes it is possible that our daughter will not be able to have her own children(though highly unlikely). That’s better than her having no future at all. We'll cross that bridge when we come to it. But I'm not sorry for the choices I've made.

Off to Children's again

Hoping that the new meds are working.

If we see a change for the good, we'll add the second new drug to the regimen, if not, we'll go to plan B!

Keep us in your thoughts.

When I get home, I'll be posting a review and contest! Keep on the look out.

This weeks Insurance Battle

Some days, I really wonder why we have insurance at all. Lately, it seems we have to fight for anything from them.

Caity's newest drug protocol starts with Flowmax. YES that Flowmax.

Our insurance company declines to pay on it, because its "experimental" for children/girls.

So, our urologist contacts them and does what they call a prior authorization. Hopefully they approve it and we only have to pay our copay.

$125 a month for one medicine of 4 is a big pill to swallow.

A little surgery news

Caity's kidney surgery has been put on hold. Not sure when it will happen, but for now its put off indefinitely.

We met with the urologist today who after viewing all of her test results and conferring with another urology specialist, decided that with the bladder issues, teh kidney surgery would only have a small chance of being successful. Not worth cutting her open for.

So We will start with treating the bladder issues. Yes. Issues. Plural. Can you hear my excitement at finding that out.

It seems our little Caity is a very complete medical anomaly. Very very rare case is she.

So the battle plan.

For the next 3-4 weeks we will be giving her Flomax (Yes, the prostate drug) every night along with her current medicine regimen. If she does not tolerate this well, we will try lowering the dosage. After that time period,if she's been able to handle the meds, we will take her in for a repeat uroflow test and see if there is any improvement. If there is improvement, we will add Ditripan to the drug cocktail. If there is no improvement we will increase the Flowmax and go from there.

Dr. R said:
Best Case scenerio : The drugs work, help with the kidney issues as a side effect and we are good with the bladder. It will never be normal, but we can make it better.

Worst Case scenerio: The drugs don't work, and she has to be on Ditripan for life and cath herself several times daily.

Onto the Kidneys

Right Kidney -- Beautiful. Perfect. Right size. Right shape. Right everything. Healthy, normal kidney.

Left Kidney -- reflux, grade 5. smaller than normal. Showing signs of heavy damage.

But hey --- You only need one working kidney to live. So she's got that going for her.



Of course all of this means extra special attention on her kidneys to make sure they are tolerating the treatment well and the bladder is not causing further damage to the left and creating problems in the right (a possibility). So yay more time for us to spend at Children's Hospital, cuz you know, its one of our fave places.


There is so much more to add to this, but I'm exhausted and upset and I just really don't have the notion to spill it all out there right now. Look for another update sometime this week.

NORMAL.........NORMAL.........NORMAL

I don't think I've ever been so excited to hear those words before.


Dr. Martin called this morning (or well her nurse did) to inform us that Izzie's tests came out fine. She did not inherit the same kidney issues that Caity has.

This is such great news. This means that we only have to plan for surgery for one daughter!


Plus, Izzie didn't need more problems on top of her others.

Off to Children's again in the morning

This time for Miss Izzie.

She'll be having a renal u/s and a VCUG, along with a standard x-ray too.

Updates when we have them.

We're hoping she does not have the VUR like Caity

One of the most annoying things ever.

Has to be waiting on a phone call to schedule a doctors appointment after test results are read.

We've been waiting forever (okay so a few weeks) for Caity's results. This is the last hurdle before we arrange surgery(ies) and other treatment stuff and it seems to be taking forever.

We just want to get it all done with so we can move on from daily meds, weekly tests and all the other fun stuff.

Banging my head on the wall

So, it turns out that Caity has a few problems, Grade 5 VUR, nuerogenic bladder, smaller kidney on the VUR side, etc.

And the VUR is hereditary, so Izzie might possibly have it too (on top of her other issues)


I know that by the end of the year, I will be so sick and tired of Children's Hospital.

So that's a brief update for now.

Updates before I leave.....

I'm headed to my mom's for the next 3 nights, so I'm not sure how much blogging I'll accomplish.

But I wanted to leave with updates posted.

So here goes:

Caity: Her VCUG and kidney u/s is scheduled for Aug. 14th @2:30. We should have results by friday.

Izzie: She's currently stable. Her anemia is better. We'll go in September to do a recheck on her lead levels. She's also putting on a little weight.