Thursday, November 19, 2015

Levi The Brave

On the IPod "When We Were Young" by: Adele

I want to start this post out by saying that with all things considered I feel very blessed. Things could always be so much worse and I feel so lucky with the challenging cards we have been dealt!  I have gone back and forth on when and if I should write about for now I'm going to write this for me so that I can process what today is and whether I decide to publish it or not hopefully I can make peace with it. 

I wrote a post last year explaining that Levi, my 4 1/2 year old, has an low immune system. It's actually called an IgA deficiency. Levi actually does have some antibodies just not nearly the hope is that as he gets older his body will at some point catch up. 

 "Selective immunoglobulin A (IgA) deficiency (SIgAD) is a genetic immunodeficiency. People with this deficiency lack immunoglobulin A (IgA), a type of antibody that protects against infections of the mucous membranes lining the mouth, airways, and digestive tract."

  It has plagued him most of his life starting with a terrible case of RSV when he was one, a multitude of upper respiratory infections, sinus infections, asthma, sinus surgery, whooping cough/pertussis, adenoidectomy, around 36 vials of blood, 5 ct scans, chest X-rays, 2 rounds of allergy testing and more...Levi takes a box full of medicines and "potions" everyday not really to treat the existing issues but to try to protect his little body from catching something worse. The kid has been through the wringer and he hardly ever complains. You would actually probably never really notice it unless you heard the slight cough that he tries to hide or the ever present stuffy/runny nose or you happen to be next to him when he says, "throw up" as he runs to the bathroom like its no big deal. 
I want to reiterate. We are lucky! It could be worse... 

Last week I took Levi into the specialist because he was super uncomfortable. On a whim, they decided to do a ct scan of his sinuses even though he had major sinus surgery last year where they drilled holes so that his sinuses would drain and we had hoped that with all of the preventive medicines his sinuses would stay clear.  Unfortunately, we were wrong. Levi is fully impacted. Infection in every crevice of his sinuses. What's scary is that you don't really want to mess around with sinus infections... They can attack the bone, eyes and the brain if left alone and If you've ever had one you know how uncomfortable it is... 
The doctor wanted to make some calls to discuss levi and when she returned to the room she looked up at me and said that while she knows I was gene tested (90% accurate) while pregnant and that Levi did have the newborn screen (which was normal) it would be silly for us not to rule out Cystic Fibrosis. I have to admit I started to feel sick to my stomach. I had a childhood friend who lived with CF. I wouldn't wish that on my worst enemy. I feel confident that levi will not have CF, but what makes me nervous is that we are having a harder time protecting him...I hate being the parent who looks around the room wondering if all of the kids have immunizations. We have seen whooping cough and it's not pretty. Levi has been on so many antibiotics that I worry sometimes that we will get stuck in a position where nothing works...

What you have to know about Levi is that he is a star patient... He is brave, braver than me, and usually has the nurses wrapped around his fingers in minutes.  For example our last visit we walked out with 7 stickers and a gold medal! 

So today we go to children's for a sweat test. We will keep our fingers crossed that it will come out negative. And we will be happy to cross it off of our list. We will hope that the antibiotics that Levi is on now will give him some relief so that he doesn't tell me again tonight that "his dreams are making his head hurt" (levi doesn't really understand that the infection is what is making his head hurt)... We will stay focused on being so thankful for what we have while still fighting for Levi to feel better. And tonight I will just be happy he has shoes to wear and try to relax when it takes him 20 minutes to find them and get them on,  I will let him make as many potions as he wants and be as messy as he can be in his science lab (aka play kitchen)... I will try to not get aggravated about the little things because honestly IT JUST DOESNT MATTER. But when I do get annoyed because let's be honest I will get aggravated at some point, I will just relish the fact that in that moment my biggest worry was the lost shoes or the spilled potion. We should all be that lucky!!!! He told me today that when he grows up he wants to be a scientist that makes good potions to help people feel good...and that my friends is ALL THAT MATTERS! 

xoxo chef a