Saturday, May 19, 2012

Sayonara Pins!!!

How long has it been since I updated this blog???  3 weeks…what a slacker.   Let’s just say I have good reason and that it’s been ummm…somewhat exciting.  Mommy probably wouldn’t use the same choice of words, but hey if you haven’t figured it out yet I’m the glass is half full kind of gal. 

The beginning of May started out with a bang.  I got that nasty bug, the Rhinovirus.  Yeah well, I kicked its butt if I do say so myself.  Sure I had coughing, sneezing, fevers, breathing treatments, irritability…yadda yadda.  However, I didn’t need oxygen and no trips to the hospital, which is a major plus for a kiddo with a trach.  I was back partying it up with my friends here at the Ronald House in no time.  Then my mom thought she’d join in on the fun and ended up in the ER with a pinched nerve in her neck…poor thing had to borrow some of my codeine (jk…she got her own…lol).  This past Monday I was scheduled to go to the operating room for the second half of my surgery with Dr. Matthews, but I had something else in mind.  I started spiking high fevers on Mother’s Day and kept them coming until just a couple days ago.  The culture came back with overgrowth of pseudomonas, another nasty bug.  But with the help of Augmentin I’m fighting that too.  [Sidebar]…Have I ever told you how much I hate antibiotics?  I’m on my 4th cycle in a little over a month and I’m just about tired of it.  It makes my belly ache and causes all sorts of icky side effects.  So instead of going to the OR on Monday lucky me got to make a trip to the ENT down in Charlotte.  And even luckier me got to get scoped through my nose, mouth, and trach…all while awake mind you!!!  Can you sense my sarcasm??  The nurse who helped with the procedure apparently was formerly a member of the WWF…well, she had to be in order to hold me down.  They’d all be crazy to think I was just gonna lie down a take it.  Anyway, nurse Jessica won in the end (I went easy on her) and the doc was able to get some good views of my airway, throat, and voicebox.  Because I was awake he got to see my functionality as well.  The good news is that I am swallowing.  Yippee!!!  Not only was there no pooling of saliva at the back of my throat (pooling would indicate a poor or nonexistent swallow), but also he actually watched me swallow a few times.  The other good news is that my voicebox is normal.  Woohoo!!!  It’s awesome to hear the word “normal” once in a while.  The ok news was that though the base of my tongue is no longer covering my trachea completely, it still is large relative to the small size of my jaw and is still unfortunately obstructing my airway.  This trach is probably going to be with me for some time, at least until I grow more or my next jaw distraction surgery.  Yuk…I don’t even want to think of that.  The bad news is that I have silently been suffering from acid reflux for who knows how long.  I mean I knew it was happening, but you bigger people had no clue.  The doc saw inflammation and cobblestone-like burns and blisters in my throat as soon as he got the scope in.  I now have to add Prevacid to my list of meds, but Dr. M is going to test me to see if food allergies are the cause of my reflux.  I sure hope I’m not allergic to pasta, because I hear my Nonno’s sauce is killer and I’ve been agonizing over the day I can finally have some.    

As for my second surgery, it is now scheduled for this Monday, May 21st.   The ENT will be doing a bronchoscopy and will replace my ear tubes.  Then Dr. M will come in and remove the pins that are sticking out of my jaw and causing such a nuisance.  He will have to go through the original incisions on the inside of my mouth so I will be admitted as discomfort and swelling are expected.  Please send up a few prayers that the surgery goes smoothly and without complication, and that I have minimal pain afterwards.  Even though I am a total trooper I still need the Lord’s hand on me and as many angels watching over me.  Thank you:).  Also, I just want to say a big thank you to my nurses, Michele and LeeAnn, for helping take care of me these past few weeks.  I am one lucky gal to have such loving and compassionate nurses and friends in my life.  Mom says she wouldn’t have made it through the days (sometimes hours) without you both.  You ladies ROCK!!!  Thank you as well to my Aunties, Gina and Janet, and my Nonni and Nonna for coming down to help my mom and more importantly to visit with ME.  You spent time playing with me, providing distractions from all the yucky stuff they have to do to me, and you provided much moral support to me, my mommy and daddy.  

With love and gratitude,
Ella Bella

P.S.  Mom and Dad, I know my addition to the fam has made your lives way more interesting than before.  I know you are both exhausted and overloaded with stress, but just think of how many smiles I bring to you everyday.  Let’s face it…I am totally worth it.  Teehee.

Me and my new pal, Cody.  Thanks for the dollie!

I can be Minnie 

But, I'm the cutest playing the Tooth Fairy

You think they'll let me take this hat home as a memento?  Doesn't really go with the pearls, but what the heck...

If you look closely (enlarge) I got my first face painting ever.  It's of a lovely flower...and you all know how I love pink :)


  1. I was so happy to see this post, but sorry to hear about the rough few weeks you guys have been having. It sounds like things are on the up and I am so excited About the swallowing and that they will be treating the reflux and any possible allergies it will make eating even more enjoyable!!! I love the toothbrush pic and Ella's jaw looks amazing !! I will keep you all in my thoughts and prays and please continue to keep us posted. I can't wait to see Ella :) Nicole

  2. Miss you guys...think about you everyday! Xoxo praying that Monday happens and you are home by the end of the week...much love, Auntie G

  3. Thanks for the update, keeping you all in my prayers especially Ella tomorrow! Monica

  4. Hi guys!! It's Layla !! I miss you guys so so so so much! I can't wait to see you guys!! Tell Ella I said goodluckand don't have too much fun withoutme!!!

  5. You seem to care a lot. It's a good thing.