Tuesday, January 24, 2012

Frustrated Beyond Belief

So today was a big day for us. We FINALLY got Chloe into a pediatric allergist after waiting 2 months (well, actually almost 5 years if I get technical). I went expecting some testing to be done and my questions to be answered, and a plan of action for my sweet Chloe. Instead, this is what I got:
1. I'm not convinced it's allergies
2. It may be that her immune system is just not responding properly and she will need further testing (ie blood draws and possible appointments with immunology)
3. I'm not convinced it's asthma
4. Sign some forms and we will get copies of all of her past chest x-rays and previous allergy testing and then we will see her back.

Can we say OH MY GOODNESS?!?!?! WTH?!?!?!? I left more frustrated and angry than you can imagine. Don't get me wrong. I absolutely want nothing more than for my child to have NOTHING wrong with her respiratory system, but this makes NO sense to me.
Here is her history:
1. hospitalized with bronchiolitis at 4 months old. On oxygen.
2. hospitalized with pneumonia at 3 years old. On oxygen for 5 days.
3. In between those hospitalizations, has had 3-4 sinus infections, and has been diagnosed with pneumonia at least 6-7 times.
4. Has required oral steroids at least 6-8 times in her life (waaaay too many)
5. Has been on daily maintenance asthma medication for over 2 years and STILL has asthma exacerbations.
6. Has been on allergy medication since she was 6 months old
7. Currently is on 3 daily meds for her allergies and asthma and also has a rescue inhaler for when she starts wheezing despite her meds
8. The inside of her nose is gray instead of the beefy red it's supposed to be and she has dark circles under her eyes and always has which are CLASSIC signs of allergies

There HAS to be a reason that my child has all of the respiratory issues. There has to be an answer. But for now I have to do more waiting. I HATE waiting. I know that there are lessons in the waiting periods of life, but when it comes to my baby's health, waiting is so not cool. I want to know what is going on and I wanted to know at our 2:00 appointment today. Instead, I'm left feeling like this:
1. Have I been medicating my child her whole life for no real reason?!?
2. Why are the meds seemingly making her better in between flare-ups or are they not really working hence the frequent flare-ups of respiratory illnesses?
3. What are we going to do if it's not allergies or asthma? Let her suffer with this the rest of her life? It's absolutely horrible to watch your child working hard to breath, using all of the stomach muscles and sucking in at the ribs just to get a breath. It's hard watching them cough so hard that they vomit on occasion. It sucks! I would trade places with her in an instant if I could. She deserves better.
4. What in the heck could possibly be wrong with her immune system if her issue is indeed not allergies or asthma? Today the doctor was talking about it and in my head I immediately went back to my days as a Peds nurse taking care of the little ones with cancer. HORRIBLE thought, I know! But when you hear immune system not working right, and there has been so much "cancer" in our lives, I think it's normal to "go there".

Please just pray for my girl. And while you are at it, pray for Brody too as he is starting this path with what they are assuming is allergies and reactive airway disease...


can you see those dark circles?!? They are always there...

4 comments:

Kimberly and Jordan said...

Not trying to butt in, or act like a doctor, but maybe an issue with food???? (dairy or gluten???). I've just been fascinated by what I've been reading lately and I could talk about it for hours...haha. Anyways, keeping Chloe and Brody and your whole family in prayers for good health this year.

Kelly said...

No, that's a GREAT point and one that I asked the allergist about. He said that dairy and gluten would definitely increase mucus which would make the cough/breathing worse, but was not related in any way to the actual cause of her respiratory problems.He said that those would cause intestinal symptoms not respiratory. I just don't know! I'm really praying for God to give me wisdom and insight as to what to do.

6L's said...

i want to hear about any good stuff in the book. like we talked about yesterday, i think drastic dietary changes can heal it all! good luck. ((((hugs)))

Drewandbetsy said...

U should read Healing the new childhood epidemics AUTISM, ADHD, ASTHMA, AND ALLERGIES. Although u aren't dealing neuro problems u will finds some great information about asthma and allergies and the immune system. Plus is that its a good read, has stories throughout the book. Was hard for me to put down. Good luck. Im praying for u and ur family!