Last Kidney Post of 2012

I'll start with The little one! We met with Calleigh's URO here in AR and he gave her a clean bill of health! She is off daily abx and doing wonderfully! Now if only she'd potty train! Her kidneys look great and her reflux is all but gone! This is a good sign. Moving on to Caitlyn! we got the call last week that her UA was finally Clear of Protein! First time in 4 years! She's off abx completely. Still on the Ditripan 3x daily and Cath 3x weekly. But everything looks great! We'll go back to Boston in June for a checkup with her Uro. If all is well he'll stop cath totally!!!!!!!

Not enough Drama in our lives so we had to fix that

by making a trip to the emergency room.

With this in hand...

Yep, you guessed it -- That's Caity's urine not the red wine in which it resembles.

So after a long run without any problems, WHAM, a new UTI this time with a new pretty visual.

SIGH.

But she's not feeling any pain and we're on meds now, so hopefully we can wipe it out.

How Boston Went.

As promised, here's the daily breakdown of our Boston Trip and Caity's surgery/recovery.

So we loaded up bright and early Monday July 18th to head to the airport in LR. Our flight was scheduled to leave at 7:40 a.m. We arrived in Chicago, to find that our plane had been given away and we were not only delayed but they didn't know when we'd be leaving OR from what gate. After a couple hours we finally got boarding info and got onto the plane. We arrived in Boston, just about an hour later than we wer supposed to. Popped on the subway and headed to the house we were staying in (It's owned by Boston Children's hospital). Got all checked in there and then went exploring a bit.

Family Inn we stayed in while we were there.

Tuesday, the 19th, we had our Pre-Op appointment. It was mostly just a bunch of talking and going over what would happen and making sure she was healthy enough for surgery. We were told to call between 3 and 5 to get our scheduled surgery time. We were told to be at hospital at Noon for a 1:30 p.m. surgery.

Wednesday, the 20th, we arrive at hospital at Noon. Hang out in Pre-Op for quite a while, Caity is nervous, upset about not having eaten or being allowed too and surgery is delayed for a while. Finally Heading to OR triage area, where they are prepping her for surgery. Anestesiaologist pops in to discuss things with us and her and asks what she wants her mask to smell like. After thinking about it for a while, she picks Cherry.

Uro intern comes by and autographs her belly. Talks to her and us about surgery and tells us he'll be back soon to take us back.

Nurse brings her goodies, a Webkinz elephant, a coloring book and crayons, and a balloon. The child live advocate woman brings her a DS to play while we hang out waiting to go back.

Finally it is time. ONly one of us can go back with her while they put her under, she picks me. So I leave Dh with all of our stuff and go back with her.

She panics and freaks out, fighting the anesthesia. Pinches her nose shut with one hand and covers her mouth withthe other. It takes a while, but finally she calms down enough to let hte gas seep in and she's gone in 60 seconds. I leave my baby and go back in the pre-op triage area. The nurse takes DH and I to the surgery waiting room where they will update us througout the surgery. We've been told it should take around two and ahalf hours. By now it is almost 2 hours after we were scheduled for surgery. Dh and I have not eaten all day as we couldn't in front of her. The nurse tells us to go eat and be back at 5 and they'll have an OR update for us.

But before we can eat we have to run to Best Buy because DH's cell phone has died completely and we can't go without it for two weeks. We get back to the surgery waiting area at 5 and the nurse tells us things are going well and tehy will be done shortly. She tells us we can leave but to be back by a quarter to 6. WE go down to the cafeteria (because we still hadn't eaten) So we gobble up some food and make it back up to the waiting area just 15 minutes before Dr. Retik comes out of the OR to talk to us.

He tells us that surgery went very well. They reimplanted the ureter on teh left side as planned and found nothing to worry about on the right side. WHEW! He says that he was very happy with the procedure and when she was all finished in the OR they'd have us come back to the PACU (like CCU).

About an hour later, we finally get to go back to the PACU. Caity's coming out of it, but she's very agitated and trying to remove her IV, so the nurse gives her some morphine and she goes back to sleep. When she wakes up the second time, she's much better and requesting Food. She gets a popsicle. We spend about 3 hours in teh PACU. We had been told in PRE-OP to expect to be there the first night, but after the 3 hours, we move to the transplant floor. A private room.

She recovered in the hospital wonderfully, aside from her being irritated by the IV and catheter (I don't blame her) all went well. We were released Friday the 22nd, to go back to the house until our POST op appt.  We left with lots of new meds, and a No- Bath order.  

Plus one more that was in the Fridge

No bath for now.  But our incision isn't too bad.

Post op went very well, her kidney and Ureter were both still swollen, but that was normal for a week post op and the severity of her reflux.   Repeat kidney u/s in 4-6 weeks here in AR and a follow up in Boston in 6 months or so to see how the bladder is coming along.

Thanks to all for the prayers.

Surgery is over! We are doing great

Arrived in Boston Monday. Surgery Wednesday and we are back at the house today! She's doing well

Starting the Boston Countdown

We are officially down to less than 2 weeks.

Tomorrow marks 2 weeks to surgery.  Yesterday was 2 weeks until arrival.

SO much to do before we leave.

Keep us in your thoughts please?

If you are local and want to help with the fundraisers, email me for details.  If you are an online/out of state friend and want to help you can do so in many ways including buying from Mandy @ Blue Bonnet Boutique, she's donating a portion of her sales profits this month to Caity's  Kidney Fund. 

Why I am fighting for 13%

I've been asked, multiple times in the last few weeks, why we are going to take Caity back to Boston for this kidney surgery to save a measly 13% of kidney. After all, you can live with just one kidney.

13% may seem like nothing to most people. But to us, it is worth saving. It means our daughter can play sports if she so chooses.

It means that if we are ever in a car accident or other medical emergency, we don't have to worry about her being completely without kidneys. It means we don't have to worry about high blood pressure or other complications from one overworked kidney.


That 13% means everything to me. The least of which is that my baby could someday lead a normal life. A life without daily antibiotics, multiple pills, and catheterization multiple times a day.

13% is worth it. It's worth taking her across the country. It is worth the $1500 in plane tickets, the lodging costs, food, subway and any other expenses this trip brings. It is worth it because SHE is worth it. She deserves this. She deserves so much more than this.

Wordless Wednesday -- Hopeful that its only temporary

*That is most of our 1 month supply*

Boston news!!!

As you all know, we flew to Boston last week to get a 2nd opinion on Caity's condition. Boston Children's is ranked #1 in the country for Uro and Kidney issues.

Heads up, there is some TMI going on her regarding UROLOGY issues. If pee-talk makes you squeamish, you might not want to read the entire thing.

Let's start with the facts. Caitlyn has the following:

A genetic anomaly known as
Mega Ureter


Grade 5 (the worst)
VUR

AND a non-nuerologically caused
Neurogenic Bladder


None of this is really new news to us. But it lines out the facts of her conditions.



while in Boston we had further Urodynamics testing which did reveal some amazing news to us!

1. There is no sphincter dysfunction. This means great things!

2. Her bladder, though abnormally shaped, stretched to capacity, lack of elasticity, is functioning NORMALLY!

3. She does have weak bladder contractions when urinating. This means that her bladder is doing what it needs to be doing, but it is weak. (This will be come important later in the report)



Some very awesome, and interesting news was that upon our first meeting with Dr. Retik, he told us that he has seen MANY children with Caity's issues. EXACTLY the same types of problems. We knew before that VUR is not rare, and neurogenic bladders generally are not either(except in Caity's case), BUT The whole combo of these issues and how drastically they have affected Caity we were told by Arkansas Children's was rare and something they'd never seen before. Dr. Retik told us that he has seen it often and coincidentally it was all in girls. He has also HELPED many of those children. *PRAISE*


After discussing things with Dr. Retik for about 30-45 minutes, we were led downstairs to a different section of the hospital to do the Urodynamics testing. To say that they do things differently in boston, would be an understatement. Urodynamics included what we are used to, a technician and a nurse But ALSO a neuro specialist and a uro specialist. This was great because while the test was being performed they were evaluating BOTH neurological and Urological responses. They asked us questions and told us thigns as the test progressed. Afterwards we met in an exam room, where they did a physical exam AND showed us the printed results of the urodynamics. AWESOME! As I stated above we got good news from the test.

After that, we got to leave the hospital for the rest of the afternoon. (Here's where I'll sneak in the mention that Hubby got us lost in Boston. he got us on the wrong bus!)


Then on Tuesday morning we met with Dr. Retik again. He was full of cheer, hope, and good news.

#1 -- He agreed taht the urodynamics went excellent with great news. He had been worried that there was a) sphincter dysfunction, and b) that her bladder was not functioning properly.


#2 -- He said her 13% of kidney function was salvageable and WORTH saving! And we discussed surgery to reimplant her ureter!!!! (Surgery is scheduled for July, more on that in a bit)

#3 -- The most fantastic to hear. He thinks that after the surgery to repair the reflux, given time to heal and retrain herself, that her bladder will be able to empty itself AND we will be able to quit catheterization.


SO, we left feeling very very relieved. We will go back for her surgery in late July, and be in boston for two weeks. After that, we'll just kinda let her heal and work on retraining her bladder.

Caitlyn's Status

As I posted last time, we had a busy few days last week.

Monday started with a renogram.

She had to lay REALLY still (without meds) for about 30 minutes for the scan.

This was the view on one of the machines during the scan.

This was the view on the computer monitor.

Another view from the machine.

As you can see (or I hope you can), we are down to One kidney.  The good kidney is functioning at 87%.  

Then we moved on for the MRI.  Poor girly was SO hungry by the time we got to the MRI, but she was a super trooper through it all!

Still out of it after MRI

When she got out, she was easily awakened and very hungry and thirsty. She drank down a whole sprite very fast, and ate some graham crackers. 

Then we got to leave in style

ACH Wagon ride!

After the tests were over, she wanted to go to Chick Fil A,  where she ate A LOT. Then she got some ice cream.

Tuesday, we headed back up to ACH, and met with her URO and the URO nurse Practicioner.  It was not good news.  We were told that the kidney was in fact gone.  But on top of that she has some other serious issues and surgery is not an option right now.  Instead, we will be having to Cath her 5x a day, every day. 

Finally getting somewhere!

Next Monday, the 21st, we FINALLY are meeting with the one who I hope will kick off things to start Caity's surgery! I am so hopeful that the new URO NP will sign off on surgery and we will get the ball rolling. I'm ready for my daughter to have a semi-normal URO system. And I'm ready for the UTIs to stop and for her to not take so many medications.

If you are the praying type, I would love and appreciate your positive thoughts, prayers and anything else you can muster that all goes as planned and we get a surgery spot!