Showing posts with label muscle biopsy scar. Show all posts
Showing posts with label muscle biopsy scar. Show all posts

Friday, January 18, 2013

The Scar

Rae had a muscle biopsy at the end of November. I was unable to see the incision because of a gigantic bandage.
(I was instructed not to pick at it or submerge it in water)


There is a scar under there somewhere...

Finally, it started to peel away on its own (it also had a tear) and with the assistance of Rae's OT the bandage was removed.
I couldn't do it. I was paralyzed with fear. 
As much as I wanted to see the scar I didn't want to at the same time.
I'm such a wuss!


Underneath the bandage we found...MORE bandages! ARGH!!!

These were actually sutures.
Again, I was told not to pick at them per a NP friend.
So, we waited and waited...the suspense was killing me!
I wanted to see what was done to our little girl!

Finally, (unless another layer hidden under the sutures) they came off!
Here's what we saw...


OUCH!

Our little girl is a trooper!

She never even acted like this gave her much pain (just seeing it makes me hurt). 
We only gave her pain medication (tylenol) the first two or three days.
Now we are massaging vitamin E on her scar twice a day with the hope it will minimize the scar's appearance on her tiny little leg.
(I swear it is about 2 inches long! Way bigger then we anticipated!)

Thursday, January 17, 2013

There and Back Again: The Last Stage

The evening before the biopsy we stayed at my brother's condo in downtown Atlanta. In all the years we have been traveling through Atlanta, we have never actually been downtown (except once when Mom and I got off on the wrong exit...Eek!...this was before Garmin's). His condo was right by the Georgia Aquarium, Centennial Olympic Park, and the World of Coca-Cola (we did not go to a single one of these). Since it was after Thanksgiving, the park was twinkling with Christmas decorations. It was breathtaking (so cliche right?) when seen from fourteen stories up. The skyline was beautiful and I couldn't resist taking pictures (just playing around) off of his balcony.




Since we had to be at the surgical center at 7:30 (and we still had to find something to eat before we arrived), we decided to get up around 4:30am and leave by 6 (at the latest). Our butts were dragging! First on the agenda: find the surgical center (check). Second: Find food! (Houston, we have a problem!) I was warned before hand that there was no cafe or anything at this surgical center; however, we could bring food with us. I thought finding something would be easy...boy was I wrong! Everything probably would have gone smoother if it wasn't for two itty-bitty problems...I am a stress eater and Jacob is a stress smoker (he is only allowed to smoke in his car). So, with Rae passed out in her car seat, I searched for fast food joints near the surgical center using "Around Me" (that was a nightmare...never again I tell ya! I'm sticking with Urban Spoon!) while Jacob listened to the Garmin.

Rae with Aunt Angie.
It took us forever to find a fast food place that was open for breakfast (oddly enough Arby's was open...didn't know they served breakfast). After much debate, gnashing of teeth, several exchanges of sharp words, we finally stumbled upon Einstein Bros Bagels! I was stoked and hopped out to get some much needed munchies. I skipped back to the van clutching a bag containing a sausage, egg & cheese bagel and a blueberry scone (later, I was sadly disappointed in the sammie...but found comfort in the tasty scone). Jacob didn't want anything (I bought him something anyway...just in case). Now we were prepared. We knew where we were going and I had stress relief in a bag...let's do this!

I'm not going to bore you with the check-in process (we've all been there). Just know, I paid my agreed upon price and went about my merry way (after making "arrangements" for the balance).

It always feels like time slows to a crawl whenever something stressful is happening. Every tick of the second hand loudly reverberates...Tick...Tick...Tick. We met the anesthesiologist (the one that had to get paid). We met a few nurses, watched a few cartoons, and I softly told Evie her favorite story (I Like Myself). She fell asleep in my arms. When they came to take her into the back and prep her for surgery (basically poke her with needles and knock her out), I didn't want to let her go. It was so hard to let her go. But, we had to...so we did. We watched the nurse carry her down the hall and out of our sight.

If I thought time moved slowly before they took her back it was nothing compared to its molasses like movement during the procedure. We were both restless. I almost immediately started eating my disappointing sandwich and Jacob dashed outside (he would not leave her). I played with Rae's iPad, flipped through a magazine, sent a few text messages, but nothing kept me occupied for long. Every time the double doors swung open I nearly leapt out of the chair from hope and fright (this continued for a couple of hours). The nurses kept us updated and when the procedure was over the surgeon came out to give us a stellar report. Everything went fine, but she's having some difficulty coming out of the anesthesia (not a surprise...that was a major concern for me). Eventually, the doors swung open and it was our baby girl, still asleep, breathing, bundled up, and wearing an oxygen mask.

Kisses from Daddy.

My nerves were still not assuaged. I wanted to crawl onto the bed with her. Cradle her. Hold her to my chest and feel her breathing. None of this was possible. The bed was too small and she was still hooked up to a couple of machines. The closest I could come to achieving my hearts desire (at that moment) was to sit on the end of the skinny hospital bed. I gladly did just that. I rubbed her feet. Spoke to her. Touched her hair. Inspected her new boo-boo's and waited (...more waiting...). It felt like decades had passed before her long lashes started to flutter. She was finally waking up! It was over! We made if over this hurdle! Now we do some more waiting...

Rae (post-op) and Xavier watching Mickey Mouse Clubhouse.
I dont' think he was thrilled that she confiscated his TV.

*This is the fourth and final installment of "There and Back Again." Click: One, Two, or Three to read the previous posts or to see the incision from her muscle biopsy click here. Even though we are still waiting to for the biopsy results, I feel that this is the best conclusion to our trip to Atlanta. The results will be their own story for a later time. Thank you for taking the time to read about our journey.

Monday, November 26, 2012

All Knotted Up: Muscle Biopsy

If this post comes across as a little scatter brained there's a reason for that...I feel very discombobulated right now and I don't believe that will stop until after Friday. I hope you can make some sense of what I'm writing...

Tomorrow we head to Atlanta, GA for a muscle biopsy. I feel sick to my stomach. I didn't feel like that a month ago, a week ago, or even a day ago, but now I feel the anxiety swelling inside. At some point, it's going to overflow and I'll probably end up snapping at someone that doesn't really deserve it (that or I'll cry for no reason at all) and I'll have to apologize.

I haven't done much research on muscle biopsies (it can be dangerous) and last night I thought I'd be brave and try to prepare myself for what is happening this week. I entered "muscle biopsy scar child" into the google search engine and I found a picture at Quinn, Krista, and Lila, a blog about a young family in a similar (but oh so different) situation. The scar took me by surprise. It's much larger than I was anticipating. I started to cry. Then I wanted to know more about Lila. What I read made me cry even more. My heart goes out to them.

I don't want to research this anymore. There are too many variables that I just don't know or understand. I'm scared...very scared. The biopsy may give us the answer that has eluded us for over a year (not very long in comparison to others) or it may only leave us with more questions and no answers. As much as we'd like to have a specific name, this will not become my white whale. I refuse to let this consume us....but that's going to be hard at times.

Wednesday we meet with the doctor at Medical Neurogenetics. I don't have any clue what to expect at that appointment, but I know I'm taking my giant binder containing all Rae's medical information. Thursday we are going to have a day in Atlanta...just the three of us. I've never been to Atlanta. Usually, we're just going through it to get to Indiana. Friday, we check in at the surgical center and then we wait.

I probably won't be writing much while we're gone. I hope you all have a great week and if you can spare a few moments...say a prayer for us. I don't know about Jacob, but I'm feeling pretty weak and angst ridden right now.