Tuesday, December 11, 2007

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.

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15 Comments:

Blogger Angela Martínez said...

Oh my goodness!! *GREAT BIG HUGS* for both you, and Emma. She's such a brave girl, isn't she? I'm relieved to hear that the initial surgery was, at least, mostly successful. And yes, I would go with option 2 as well, no matter how much a mom doesn't want to see her kid hurt. The fact that the doctor seems so confident is great.

Glad to see you posting, and I completely understand the avoidance thing. *hugs* again... and again... and again. How's the rest of the family doing? Is Jake adjusting to college life?

12/12/2007 6:03 AM  
Blogger DD said...

It is good to see you have updated though I'm sure you'd hoped it'd be a bit different (per your title). Do not compare what others go through to your own. Everyone's troubles and pain are unique unto the person experiencing it and all we can do is emphathize with each other.

I think of you often and wish Emma a very successful surgery and you some peace of heart.

12/12/2007 10:03 AM  
Blogger canknitian said...

I'm glad to see your post but sorry to hear that yesterday's appointment did not go as well as you had hoped. On the other hand, I'm very glad they identified some next steps that you feel you can take.

Thinking of you in Fredericton!
j

12/12/2007 11:09 AM  
Anonymous Robin Elise Weiss said...

We're here to support you no matter what! *hugs*

12/12/2007 11:14 AM  
Blogger regina.joskow@gmail.com said...

Kids are so amazing, aren't they? I'm so sorry that you all have to go through more surgery, but I'm glad to hear that the doctors are taking proactive steps and feel like there are good, positive steps that can ultimately help. I know we don't know one another personally, but as a fellow mom, I totally empathize. Sending you and your beautiful girl good thoughts and positive vibes.

12/12/2007 11:39 AM  
Anonymous Michelle said...

Oh Gretchen. My heart aches for you and sweet, sweet Emma. I am glad they feel confident with the next procedure and that you have real hope for a resolution. She is a brave girl. And, you are a brave mama. I am also sending you healing and positive vibes.

12/12/2007 12:44 PM  
Blogger Pearls Mother said...

Love and hugs for all of you.
Lindy

12/14/2007 5:00 AM  
Blogger JayJay said...

I'm so sorry that Emma will need another surgery. You are both in my thoughts.

12/14/2007 2:53 PM  
Blogger Stepping On Legos said...

My body is all tense and achy just reading this. I know that feeling well. I am SURE this is far more difficult for you but what the heck consolation is that anyway? I'm so sorry it wasn't 100%. I have great confidence it will be a piece of cake. I think it helps that she will know what to expect too. I think you're making a great call - I would hate to live with that black cloud, always wondering and worried. I've heard you can get kidney damage with even asymptomatic UTIs - who wants to live in fear of further damage?

12/14/2007 6:09 PM  
Blogger The Boot said...

Wow. *hugs*

12/14/2007 11:46 PM  
Blogger D said...

I too am glad to hear you're going with option 2. Good thoughts to you both.

12/15/2007 9:25 AM  
Blogger SighsofmyLife said...

Oh no! I know that feeling of wanting to get your child the hell out of there and it sucks. Knowing that the surgery wasn't 100% successful sucks. Having to put her through another surgery sucks.

Big hugs to all of you.

12/16/2007 7:48 PM  
Anonymous Anonymous said...

I have been thinking and praying for you and your family for months, hoping all was well. I'm glad to see you post again, and hugs to you and your lovely daughter
Kathleen

12/19/2007 1:58 AM  
Blogger Katrina said...

There's no need to downplay what you're going through. This is tough stuff indeed, and Emma is lucky to have a mom like you. Hugs to you both.

I would have made decision #2 as well, and I'm sending warm healing thoughts your way that this next time you'll be able to write the blog post that was meant to be all along.

1/15/2008 8:14 PM  
Blogger Erin said...

I wish you'd have gotten better news...

It's amazing how well kids take these things though huh? *hugs* to you guys.

1/29/2008 9:50 PM  

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