Thursday, January 17, 2008

Buts, Butts and juice

So today was a pretty blah day except for the fact that mackenzie learned a new word- BUT, at the moment she doesn't know what it means thankfully but she wanders around pointing at things and going 'but' (which comes out sounding like fut) its cute but will get old quick i can tell i think this brings her up to a grand total of 13 words. We are supposed to be getting scheduled for a speech therapy consult though I think she is pretty normal, she babbles a lot she just doesn't like to speak. Though I guess its better to be safe than sorry.

(really long back story here)

Now as many of you know back when kenzie was 3 months old she got her first UTI which was diagnosed by the wonderful folks at the hospital's ER. We were later refered down to children's by our FP's partner(she was on maternity leave) to get a VCUG(flouriscopic voiding cytourerthrogram) and a Renal Ultrasound to diagnose, any problems. It was at that time she was diagnosed with Vesicoureteral Refluxation of the III grade. The PA that we saw I didn't like(i didn't know at the time she was a PA) she had the WORST bedside manner EVER. Basically she told us that 'there is nothing we can do other than leave her on antibiotics'. So we came home with a prescription for some bactrin and orders to follow up with our FP.

Well we followed up with her at our regular WCC in december(she'd been diagnosed in september) at 9 months old. We were at that time given orders to re-see the PA in June/July to follow up a year after diagnosis. A few weeks later, Kenzie became inconsolable, fussy and was just not herself. So I called the FP's office to try and get an appointment as I suspected a new UTI. Well unfortunatly our FP was unable to see her BUT the brand new pediatrician just happened to have openings. We got an appointment less than an hour after I called(i seriously LOVE our pedi she's amazing) went in and took a urine sample by cath(which if you have never had to hold your child down while they catherize them count your lucky stars) and confirmed that she had a UTI. The Ped sent us home with a scrip for Amoxicillian, and orders to come back in a couple days for a reculture. Well we went home did the scrip routine, and came back. We ran another culture to find that her levels hadn't dropped at all in fact the little buggy boys had MULITPLIED. So we opted for some stronger antibiotic, and a order to check back monday. Well come monday still no change other than that the levels had stayed static and not gone up. So at that point she sends us home with some Omnicef, and let me tell you with in HOURS of her first dose kenzie was a whole new baby.

All the while while this was going on we(the ped and i) had been talking about when we were supposed to follow up with children's for a repeat VCUG and Renal U/s. Since I had so severely disliked the last urologist we'd seen down there(the PA) I hopped onto their website and started researching doc's. Well that was when I came across the little fact that the urologist we'd seen was a PA not an MD. So needless to say I was NOT a happy camper. I was lucky enough to find a WONDERFUL Doctor down there who SPECIALIZES in VUR. So on our next follow up to the pedi, when she and I decided it would probably be best to follow up sooner w/ the doc, I told her that I wanted to see Dr. Joyner. She said she'd get it set up and have them call us. A couple days later we got a call from children's to arrange the appointment with him. Apparently he is a very busy man because the first available appointment was in APRIL. But hey, this guy is the best right? OF course we'll wait for the best.

Between january and april she kept having reccurring bladder infections and was on constant antibiotics that caused her to have a HORRIBLE diaper rash. Imagine what your feet look like after they have been in wet socks all day. Than add in some blood, and giant cracks, and general pain. She had to have a 6 step diapering regime for it. first we had to change her as soon as we knew she was wet, secondly we had to wipe her with a wet WASHCLOTH(no wipies), (3)than we had to dry her with a dry washcloth, (4) apply a LIGHT coat of baby powder, than the bactrin ointment(for the open sores), (5) coat the rest in calmoseptine(used for bedsores) and finally (6) we could apply a new diaper. Her diaper rash got so bad that we actually had her on Zyrtec for a while because it helped with the puffiness, redness, and swelling of her poor butt. Every diaper change was pure hell.

Our visit to childrens was April 10th. I must say that I LOVED Dr. J from the moment we met him. It was night and day from our last Urologist. He smiled, had a wonderful bedside manner, appreciated the fact that I had done my research, and actually joked around with me between his explanations(i have a really good sense of humor that comes in handy down there sometimes). He looked at her films and reconfirmed what we already knew that she had a stage III VUR and had been having breakthrough infections on the meds. He and I discussed the options and we both agreed that doing a Deflux injection endoscopicly would be the best way to handle the treatment. Now at that point I expected that we would have at least a week to wait before the procedure. It just happened that he had an opening a few days later on the 13th and could squeeze her into the schedule. So we went in on Friday the 13th and had the endoscopic procedure done it didn't take that long and she got both her right and left sides done(she'd orignally just shown symptoms on the right in the VCUG but the other side looked just as bad). She was put on Nitrofurantoin and we were instructed to follow up in 6 weeks with another VCUG. We did that and came back and she was ALL better(mommy sigh of relief) so we started 'weaning' her off her meds and had her completely off by mid-july. Since than we have had ZERO breakthrough infections. We had a couple suspected breakthroughs but they turned out to be false alarms.


So that brings us to tonight. I fed kenzie dinner and took her out of her high chair and went to carry her upstairs to bed. Just as soon as I touched her she started CLENCHING(tightening her abs and body) which isn't a good thing(if you've ever tried to carry a board stiff toddler you know what i mean). So I carry her upstairs her wailing incosolably the whole time that I am touching her. We get upstairs and I take her jammy off(i'm a bad mother i know) to change her diaper for bed, and pull the diaper off to reveal a HORRID diaper rash. Now over the course of the last few months I have come to realize that juice makes her have really acidic urine/poop so I try to avoid it at all costs. I gave her a SMALL amount yesterday(1/2 ounce in 9 ounces of water) so I am wondering if she is THAT sensitive or if it might possibly be another UTI as she is also exhibiting her 'symptoms'(she doesn't do textbook UTI symptoms) of clenching, being generally inconsolable, running a fever(100.9), and just not being herself. At this point I am not tooo worried because our 'magic number' is 101.5 which at that point we MUST go into either the dr's office, emergent care, or the ER depending on the hour. Sooo wish us luck that it isn't a UTI.


Anonymous said...

Lot of trouble for such a young child :(.

I hope she gets better soon.

I was thinking that the whole diaper situation doesn't help in the least (without being 'unclean' it doesn't help with any bacterial situation).
I would advice taking her off the diaper as soon as you can and see if it makes any difference (at least, even if she still get UTI, she won't get as bad a diaper rash...).

Good luck and my thoughts to both of you :)

justmylife said...

Bless her heart and yours too. I hope everything gets better soon.