Tuesday, October 21, 2008

My Poor Baby

We are in the process of confirming her diagnosis, but it looks like Lily has Childhood Nephrotic Syndrome. I'll start from the beginning...

About a week or two ago, I started noticing Lily was feeling heavier. I figured she must be experiencing a growth spurt, but deep down I had a feeling that something just wasn't right. It wasn't until this last Saturday that Robert and I both noticed something wrong. She woke up that morning with very puffy eyes and a runny nose. Maybe the puffy eyes were caused by the cold she apparently had? We went about our usual routine. Lily was of course her happy funloving self. We took her to the park in the afternoon. At one point she was going down the slide and I noticed her legs seemed to be larger than normal. My first thought was, we have GOT to cut back on the snacks! Sunday morning she woke up still very puffy. We opted not to go to church as she was still dealing with her cold and I didn't want her to be around the other kids. We did, however, decide to keep our lunch date with Robert's mom. When I got her dressed, I noticed the outfit I was putting on her that was a little too big just 1 week before was now fitting her very snug. As I was carrying Lily in the parking lot I couldn't help but think she was just feeling too heavy. I weighed her when we got home and according to the scale, she had put on 4-5 pounds within the last 2-3 weeks. Now Lily is a good eater, but she certainly hasn't eaten enough to warrant that much weight gain. First thing Monday morning I called her pediatrician and made an appointment. The doctor looked at her and confirmed she was definately puffy and bloated. He asked a few questions and mentioned the Nephrotic Syndrome, but needed a urine sample and blood work to confirm it. (Of course all I heard was, "Syndrome blah blah blah kidney blah blah protein blah blah steroids blah blah blah don't worry". Ha!) He attached a little bag to her and I put her diaper back on (the things they have in the medical field never cease to amaze me!). I took her to the park as she was pretty upset about having been to the doctor, and then went back to the office to return the sample. He came back within minutes and said her urine was "loaded with protein" and he was pretty sure of the diagnosis. Basically her kidneys are losing protein so water is moving into the body tissues which is what is causing the swelling. So we left the office and headed to the lab for her blood work. She'd never had her blood drawn like this before and needless to say, I was pretty nervous about it. While the phlebotomist was very nice, she had to poke and dig around in both of Lily's arms and came up with nothing. Lily was screaming her head off...louder than I'd ever heard her scream, and I was going back and forth between wanting to punch that lady in the face and feeling sorry for her because I knew she was doing her best. Lily was just so dehydrated that is was difficult to find her veins. She advised me to take Lily home and give her water, water and more water, and bring her back in the morning. Yes....that's what I want to do...put my daughter through more torture. The nurse felt so badly, she kept handing Lily more and more stickers to try to make her feel better, which actually did work! Anyway, I took her home and tried to keep myself calm about the whole thing. I looked up the syndrome on a website the doctor recommended and felt much better about the prognosis. This morning I got Lily up and when I got her dressed, her feet were so swollen I couldn't even get her shoes on, so she wore her kitty slippers, which she loved! We had a much better experience today. The phlebotomist got Lily's vein on the first try. Lily still screamed the whole time, but at least it's done now. She stopped screaming and was happy again as soon as the needle came out...and let's just say Lily has quite the sticker collection going! So now we go back to the doctor tomorrow to read Lily's TB test. I guess she had to have it again because the treatment for this syndrome is steroids and she has to have a negative TB. We also have to wait for the bloood tests to come back to confirm everything and then the doctor will talk more about her treatment. She will need to be on a low sodium diet, which is just as well anyway...for all of us. The good news is she will outgrow it. She may never even have another bout with this, or she could have them occasionally through her teens. At least it is minor and there will be no permanant damage. I keep wanting to feel sorry for her, but she has no clue there is even anything wrong with her! She is such an amazing little girl...a little trooper. She is so full of joy and laughter. We are so blessed. The doctor told me I should take pictures of her...not sure why. Maybe for the specialist he will refer us to after the blood work comes back? Anyway, here is my poor puffy baby.


Lily having lunch after her horrible no good day at the doctor's office. She would look at the bandages on her arms, then look at me with a very serious face and say, "All done doctor's office." She is so stinkin' cute!
Her legs look really puffy in this picture.
And here she is, cracking herself up, with no clue as to what's going on. Just a happy, sweet little girl.

3 comments:

Lindsay said...

Oh I'm so sorry. Poor Lily having to go thru this. Thank God it is something treatable and that she will outgrow. She certainly does look puffy in the photos, poor baby.

I can't imagine how awful you must have felt waiting to find out what was wrong. I'm praying that Lily responds quickly and positively to her treatment.

Best wishes to you and your munchkin.

Val said...

Oh no. Poor little Lily. At least it is something that is treatable. But how horrifying to see her so puffy.

We will be praying for better days.

At least Lily doesn't seem to be bothered by it. She is such a happy little girl!

Jill said...

Julianne,

I'm sorry you, Robert, and Lily are going through this. I'm glad that the prognosis is good, and that Lily is handling it like a trooper. I'm sending lots of loving thoughts your way. Hang in there mama, and don't forget to take a moment out for yourself too. Care givers have a hard time doing that!