best Mother's Day gift. Ever.

Friday morning was Emma's vcug and the surgery worked! No sign of reflux on the x-rays at all! The beginning of the test was not great, with Emma remembering the last one and being very tense and upset, but once the catheter was in it was all coasting. We still have to get the official news from her urologist, but the results were obvious. I nearly burst into tears when the radiologist said it out loud. She will have a follow-up vcug in about a year just to be sure nothing has changed. We got home and happily poured out the rest of her antibiotics. It's over.

In other news, Ben's appointment last Monday was a good one and we were both very happy with his new opthamologist (we jumped through hoops to switch from one at Children's to another, and it was well worth it). The patching has made some improvement and he can now patch five days a week instead of seven. In three months we'll go back and check again.

I hope all of you moms out there had a wonderful day.

waiting for next week

On Monday Ben will have his first follow up appointment since we started eye-patching. I'm not sure if I ever talked about that here. This past fall, after not passing his routine eye screening at the pediatrician, we found out that he is extremely far-sighted. Added on to that, the two eyes have very different degrees of far-sightedness, which means that the better eye was doing all of the work, causing a lazy eye, although not the kind you can see from looking at him. They appear to work together, but his right eye was basically just hanging out. So he got glasses and two months later we started patching the good eye for 1-2 hours a day, to force the weaker eye to get to work.



On Friday Emma will have her VCUG to find out if the surgery worked for her left side. We are going back to the private radiology place where she had her first one done because the last one at Children's was much harder than the first. I'm feeling optimistic that it will be good news. Hopefully that won't jinx anything.



And a Lydia pic...just because. Oh...that knitted top she is wearing is the little Debbie Bliss dress I knitted for her while I was pregnant. She wore it her first Easter as a dress, a second spring/summer as a shorter dress and can now wear it as a little top.

one hurdle cleared, one to go

Yesterday was the ultrasound to check for blockage and everything looked good. We were able to see the mounds that they made on each side of her bladder and it was apparent what the surgeon meant when he said that the second one was "good, but not great." The one on the right side, from the first surgery, was shaped like a little half-circle, flat side down. The left one, from February's surgery, looked more like a round of dough. Sticking up, but more flat. But hopefully that will be good enough.

Her vcug, where we will find out if the surgery was successful, is scheduled for the morning of May 9th. For that we will return to the radiology place where she had her first one, because it went so much smoother there than the one at Children's in October. I have great expectations that we will get good news.

We had a little scare on Friday when she went to the health room at school, complaining of a headache. No fever at that time, but within two hours it was 102, so we had to go in to be sure it wasn't a breakthrough UTI. The good news is that it's strep (odd to say strep is good news). So now she's taking amoxicillan for ten days in addition to the suprex she has been taking since last spring. Man, I can't believe that, as of 3/15, this will have been going on for a year.

update

Copying and pasting from an email I sent out to family last night.

We're home from Children's. Emma's surgery was scheduled for 2:30 but
when we got there at 12:30 they rushed us through check-in because the
patient scheduled before her was rescheduled.

It took a little longer than last time and the surgeon said that the
site was totally flat and showed no sign of having the procedure done
before. He then said that he ended up having to use double the amount
he used in her September surgery and that it looked good, but not
great. Gah. Not exactly what we wanted to hear, but last time it
looked great right afterwards and didn't stick, so maybe good will be
good enough.

Emma came out of anesthesia really well--not as much confusion as last
time and is comfortable as of right now. We expect that tonight will
be uncomfortable, as last time, but hopefully not as bad since she
knows what to expect.

And, as of this morning, I am happy to say that she has had far less discomfort than last time. Yea! Now we begin the one month countdown until the ultrasound to be sure the deflux doesn't cause any blockage and then two months later for another VCUG to see if it was successful.

Oh, and you know what she chose from the gift shop?

love note

found on the mirror yesterday morning

surgery tomorrow.

Insomnia tonight, as expected. Last time Emma's surgery was in the morning but this time we've drawn the 2:30 slot. Luckily she can have clear fluids (and jello) up until 10:30 am, which is when we will leave the house and head to Children's. We should get there in time to make a quick trip to the gift shop, one of her favorite spots there (along with the cafeteria and the smoothie stand in the lobby).

Emma's teacher suggested that she might want to keep a journal and, because she loves to write, she is. The thing it has confirmed for me is how little she thinks about it all. The very first entry has a list of good things and bad things about the surgery, but beyond that, each day only mentions it in her countdown at the bottom. The rest is filled with talk about how much she loves her art class, how she isn't great at volleyball (which her class is doing in p.e. right now), but she thinks she's getting a little better, my friends coming over with their delicious babies (more about that in another post), and other regular stuff. The same things her journals have been filled with for years. It does my heart good to see that.

So by this time tomorrow we should be finished with reflux. Knock wood, crossed fingers, sending up prayers like you wouldn't believe.

Emma's current favorite picture

p.s. Thank you for the birthday wishes for Lydia...and, yes, she is still very much Fireball. Heaven help us, she is.

not the post I meant to write

I have been avoiding this blog, waiting for this to be over. Waiting to say, "It worked! We're done with this!" And then move on. This whole thing has just been too much. Then I think about others, dealing with so much more. Unimaginably more. And I feel pretty lame.
But.
I still haven't been able to completely shake this cloud. It has been lifting and I was feeling nearly normal. Monday morning I even felt optimistic. Gah. Here I am, making it all about me, and it's not.

Sometimes when I go outside and it's really cold I notice, after a while, that I am aching all over from clenching my muscles, trying to stay warm. The thing is, it takes a long time before I even realize I'm doing it. Then the muscle fatigue hits, all at once, and I'm exhausted. Completely and utterly exhausted.

Emma had her surgery in September and it went well that day. The surgeon was really pleased with how it went and after some initial pain at home that is normal with this type of surgery, she wasn't too uncomfortable. She moved gingerly for several days and then was back to normal. The thing with this surgery is that you don't know whether it worked until they do a follow up VCUG three months later.

Emma's follow-up VCUG was yesterday. The test itself sucked. Her last one wasn't great but it wasn't all that bad. This time the catheter hurt a lot going in and coming back out. Her face alternated between a grimace and eyes wide with fear. As I leaned over her face and whispered to her that it would be over soon and reminded her to blow, inside I was screaming and wanting to just grab her up and run the hell out of there.

Once the xrays started I watched the monitor and, to my eyes, the first side looked good. When they checked the second side I thought I saw something, but hoped I was wrong.

It's not all bad news. The side that was worst is all better. Perfect. The side that was not as bad is the same. Ever-so-slightly better, but not enough to be considered a lower grade. So we were given two options:

1. Do nothing and hope that she doesn't get sick. With any future fever we would have to take her in to have a culture to be sure she doesn't have a urinary tract infection. The problem with this option is that we saw from this past spring that her first and only uti resulted in kidney damage.

2. Repeat the surgery. The surgeon feels confident that the mound they created at her left ureter simply shifted and that it's very likely to be successful this time.

We're going with option 2, because I would go out of my mind just hoping that she never gets another uti in her life.

Emma actually seems to be taking it in stride. I need to take my cues from her. Because I'm still clenching and aching.

p.s. for all the times I've felt suspect of clowns, I apologize. To the Big Apple Circus clowns who made my baby laugh during part of the long wait at Children's hospital, you rock. She's impossibly shy and turned her face into my sweater so that you couldn't see, but she loved it. Thank you.

I haven't fallen off a cliff...

...you know, in the literal sense. I've been living too much in my head this summer, pushing everything else to the side. If not for the kids I think I would have slept this entire summer. With school starting and summer coming to a close, I need to get back on track.

Emma is doing well. She is still taking the antibiotic daily (the consolation for a nasty-tasting daily dose is ice cream/popsicles for the kids each day at 4pm, so I can't really say they have been sad about it), and her surgery is scheduled for September 18. The recovery is supposed to be remarkably short, so she should only miss two days of school. After that she will have another VCUG at 3 mos post-op to see if it was successful.

I'm sorry that I haven't given the fundraiser the attention that it deserved. Please accept my apology for that. I will be posting the winner of the August drawing later today (while it's still August), and the final drawing will be tomorrow.

So, if anyone is still reading, watch this spot just a bit longer, please.

that was a long day

All in all, it was exhausting, but Emma had a good time. Lots of one-on-one time with me and lots of time to check out the different floors at Children's, plus breakfast, snack and lunch there. She loved that part. Their cafeteria rocks and if you happen to be there tomorrow, they're having an Iron Chef competition at 11:00. I hope you don't have any reason to be there tomorrow. We also knitted together (Louisa Harding's Thinking Dress--scroll down).

The bad news is that her right kidney is damaged, but the good news is that it's
not too bad. The urologist said that it probably will not cause her any problems in the future. During the scan you could see that her left kidney was a normal shape but the right one looked like a kidney with the top chopped off.

The procedure itself wasn't bad--an iv-type thing (she did great), then lying still for a long time during the scan. There was lots of waiting around between the injection and when they can do the scan (1 1/2 hrs) and then again before seeing the urologist (same, again). It's pretty freaky taking your child into a room that says "nuclear medicine, though."

After talking further to him about the surgery, we are opting to go with the less invasive procedure even though the odds of success are lower (they have a 98% success rate at Children's with the open surgery and about 80% with the Deflux) and a certain percentage (can't remember off the top of my head) of kids end up having to have it repeated one or more times before it is successful or they then move on to the open surgery. He recommended trying it once. She'll then be re-tested for the VUR three months after that and, if it was successful, again 12 mos after. If it isn't successful, we will move on to the open surgery. In the meantime, she'll continue to take the daily antibiotics until we have a successful result.
I'm not sure when it will be. I have to call this afternoon to schedule it. Hopefully it won't be a two month wait like the DMSA was.

He also recommended having Lydia tested since she is in the prime risk group (<4, girl, sibling with VUR). I'm choosing not to think about that right now. She has her 18 month check up on the 2nd, so I'll talk to the pediatrician about it then.

I really cannot thank you all enough for your kind words, prayers and good thoughts for Emma through this.

tomorrow

Emma's kidney scan is tomorrow down at Children's Hospital. We are to arrive at 9:00 and the injection is supposed to happen at 10. Then we hang out for a few hours while the stuff travels through her body. Then they start the scan, which takes about an hour. I'll take her down and then Billiam will join us towards the end of the scan. We will meet with the urologist immediately after to discuss the results (please, please, please no damage) and schedule her surgery.

We will also talk to him about possibly testing some of the other kids as, depending on which study you read, 30-50% of asymptomatic siblings of VUR kids also have VUR. The fact that Emma has had it for all of these years without a single symptom until this past spring freaks me out.

Sorry for the boring blog of late. This has been zapping any extra mental energy I would have to post.

Emma's appointment, short version

I read up on vesicoureteral reflux and was prepared with my questions. The guy we were seeing is at the top of his field.

Within ten minutes of talking to him he was explaining the two surgical choices that we have. At this point we are thinking we will go with the less invasive endoscopic one that involves injecting a gel material at the base of the ureters. Downside, its success rate is lower and I've come to read that it's not necessarily a permanent fix. Upside, it's not open surgery and I have to say, that's a huge upside in my mind.

Once he started talking about surgery, all of my questions flew right out of my head. There's a reason they say to write them down.

Before any surgery, she will have a procedure where they inject a radio-isotope into her vein to check for kidney damage. Our insurance is changing on July first and I just hope that this doctor is part of the new plan. Hopefully Billiam will be able to get information about it at work next week. They usually keep it all hush-hush until the last second.

end of school year stuff + worry = no posts

Thank you all so much for your prayers and kind words on Emma's test results. We got a bit more info and she is a grade 2 on her better side and a grade 3 on the other. Not as bad as it could have been (thank you!), but hearing it out loud set the mommy brain wheels turning. On June 8th we'll be seeing a pediatric urologist to see where we go from here.

I'll be back to posting soon. I'm not all doom and gloom. I have good stuff to share, too.

VCUG

It was this morning. We talked about what would happen during the procedure last night and Emma was pretty upset. During the drive to it this morning, she was quietly sobbing in the back seat. Getting her out of the car was pretty bad and then into the office from the hallway was no better. I was able to talk her down, which was a huge relief. I was afraid I was going to have to carry her in, crying. That would be Emma crying and me.

The doctor and the two p.a.'s who helped were wonderful. They explained every step of the way before and during the procedure. The procedure itself was not nearly as bad as Emma feared it would be. When they first started with the catheter, her whole face screwed up into a little ball but then that part was over.

As soon as they had her turn from side to side (while taking the x-ray), the fluid shot up to both kidneys.

"That's reflux."

I was so sure that it wouldn't be.

We're now waiting to hear from our pediatrician about the severity and where we go from here. Reflux is graded on a scale of 1-5, with 5 being the most severe. They gave us a copy of the films and her right kidney is definitely much worse than the left. I've been studying images online and all I can tell for certain is that the better one is worse than a grade 1. The doctor did say that children Emma's age rarely outgrow reflux. From what I've read, treatment can range from prophylactic daily antibiotics to surgery. If you pray, please send up a word or two that she won't need surgery.

grades of reflux

partial diagnosis

So we've gotten back some results. Emma has a mild uti, for which she has started antibiotics. But that is not likely the cause of the repeating fevers as she didn't have one last time they did the blood work and it's really pretty mild. Her sed rate is high, indicating some sort of inflammation but, again, the doctor doesn't think it's as high as it is because of the uti. It was slightly elevated when they did the first blood work and now it has more than doubled.

They want to see her on Thursday and then a week later. In the meantime we are to monitor her temperature and keep a log (to see if she's having fluctuations that aren't the high fevers). Next week they'll decide whether she should see a rheumatologist or infectious disease specialist. We are confident that whatever it is it's not contagious as no one else has gotten it.

Her white blood cell count is good, which pretty much rules out the big scary stuff.

So that's the scoop for now.

Congratulations, Emma! You win...

...more blood work.

Emma sported another high fever on Wednesday into Thursday. So, of the last five weeks, including this week, she has had only one week of wellness. Three with high fevers and one with the knee thing. In between her energy level is lower than usual.

So we're trying to figure out if she has just had a run of very bad luck, catching viruses left and right, or if they're somehow connected. They're running the same tests as before, to compare, as well as a few others. We went to a different lab and it was the polar opposite of our experience before. They took us back before the front desk person had finished copying our insurance card and we were out of there lickety-split. No blood trails left behind.

We finally found an orthodontist in the area that seems super nice and doens't require half up front. That's always a good thing. So now we can get started on Hope's second round of braces (the first round was for an underbite in third grade). I wonder if they give a family discount, as Clara and Emma seem like they're going to be needing them, too.

Emma and Vita and Jake (oh, my!)

Emma went back to school today. No fever (yea!). The only thing we know, so far, from the urine test is that she was pretty dehydrated Wednesday morning. That didn't surprise me as I'm having a hard time getting her to drink. They threatened iv fluids and I think she's taking it seriously now, making herself take more sips.

We all went to see my sister and the babe at the hospital tonight. They are set to go home tomorrow. You know that newborn test they do to check the hip joints? The poor wee girly's hip popped right out of the joint when they did it. They will head over to Children's tomorrow to see an orthopedic surgeon for a more thorough diagnosis. Hopefully it's something that will just correct itself.

I forgot to take my camera (argh!), but with a lot of the swelling down in her face she is looking less like a clone of her daddy. Not that she wasn't adorable that way, but it was really cool walking into the room and immediately seeing something of my sister in her.

Oh, and Jake got his third college acceptance letter. This is for choice #3, so it's unlikely that he'll go there but it's fun to know he was accepted at all three. Choice #1 is looking very good as they put together a financial aid package that brings the cost to within 1k of Choice #2. It will be interesting to see what Choice #3 puts together. We should have that within the week.

this is the part where I say, "Uncle, already! UNCLE!"

Emma has a high fever again. 104.1 at its highest, easing down between doses of motrin then shooting back up. Last night she was vomiting into her hair as she slept. Yeah, gross. Sorry. At three in the morning I was standing her up in the shower washing it out. I don't think it's a stomach thing, though. She threw up once at the start of her other fever a few weeks ago, too.

Coming on the heels of the other fever thing and the knee thing, the pediatrician wanted to see her but can't say whether it's somehow related or just plain bad luck. They wanted to do a urine culture but you know, that doesn't necessarily work when you're nine and barely drinking. We'll try again for tomorrow morning as Billiam passes right by the office on his way to work.

Crossing my fingers that she'll be better by then and we won't have to bother.

And wouldn't you know that today is the last day of make-up testing for the state assessment tests she missed when she couldn't walk. They called this morning to say that she has 1/2 a test left to do...could I please bring her in. Um...she has a high fever and can barely stay awake to take a sip of water. Long pause. "Well, could you just bring her in for a half-hour?" Yeah. You hold her up and I'll guide the pencil. George Bushington (thank you for that name, Laura), feel free to leave my child behind today. She'll catch up when she's not burning up with fever.

post-viral arthritis.

**if you've clicked here from googling "post-viral arthritis, please see note at bottom of post**

That's the diagnosis. Emma had a virus the week before the knee started with a scary high fever. At one point her fever had come down (from 105.1!) to 99.something and she was in a state of confusion. She couldn't remember the name of her school, teacher or how she gets to school ("I ride the.....hamburger?"). Then she started crying because she couldn't remember her teacher's name. I reminded her that it's Mrs. G. and about her new baby boy and Emma just stared at me like I was speaking another language. As I got dressed to take her to the er (it was really freaking us out), she slowly came out of it.

So, post-viral arthritis. Goes away on its own and is rarely chronic. She's all better and it was nothing scary. I'll take that.

p.s. Mrs. G. has told Emma that she will be bringing in a picture of baby Seth wearing the hat when he came home from the hospital. Is there any higher compliment on a baby knit?

**I get a lot of hits for this post from people googling "post-viral arthritis." That is not what this ended up being. For what ended up happening, click on "reflux sux" in the labels just below.

back at school--yea!

Emma went back to school today. Friday night she started limping around (instead of hopping) and then woke up Saturday with it more swollen and painful. More ice and motrin and that gradually improved over the day. By yesterday she was able to walk around without limping. Based on this, I am guessing that the rest of the blood work will not show anything. Weird. Just plain weird. I'm just glad she's feeling better.

Thanks for all of the good wishes and hello to Pippi--small world, indeed! As soon as my brother said your name and the word yarn I knew who he was talking about. I've been reading your blog and coveting your yarn since I first saw it last summer. To the rest--my brother was telling me about someone that he knows in real life from way back when who does the yarn thing and it was none other than Pippi! It's like one degree of Pippi. Way cool.

so far

So her white blood cell count is normal, as are her hemoglobin, liver enzymes and something else. Go, Emma!

The ones we're still waiting on are Lyme, rheumatological something or other and strep. Those should be in on Monday. If she's not better by Monday, she'll go see an orthopedic doctor.

Thanks for all the good thoughts. Other than when she tries to walk, she's in good spirits. I'm hoping for "all better, nothing conclusive."