My Reasons

My Reasons

This Is Where It All Begins

This Is Where It All Begins

Thursday, October 22, 2015

miss molly and the mystery mucous

Since Molly was teeny tiny, just a couple months old, we have noticed that she always seems to have a bunch of mucous and a constant runny nose.
The mucous has in turn created lots and lots of ear infections.
The ear infections were reason to take her adenoids out and get tubes put in.
The tubes would help the infections, and getting the adenoids out would supposedly get rid of all the green, thick, nasty sludge that is constantly draining from her nose and back into her sinuses.
Well, the tubes helped a ton with the ear infections...but the mucous has still been as thick and consistent as ever.
A few months ago, Molly started getting sinus infections from all of this mucous not draining properly and getting infected.  It is just too much junk for her body to get rid of.
Along with her sinus infections, she was getting tonsillitis too.
She had three infections in less than three months.  She had full rounds of antibiotics with all of them, with no improvement.
After the third infection, her pediatrician referred us to an allergist.  We all figured she must have some kind of allergy creating all of this mess.
So, off we went.
The results...negative.  All negative.
And the infections and the mucous continued.
The allergist referred us to a lab to get blood work done for autoimmune diseases, as well as a sweat test for cystic fibrosis.
This one hit home for me.  My uncle passed away from cystic fibrosis, and I was terrified that my little girl could suffer a similar fate.
The sweat test had to be done at Primary Childrens in Salt Lake. 
They put these electrodes on her arms for 10 minutes to open her sweat glands.
Then they place heating pads on her arms and wrap them in a tight plastic wrap.
Then, they wrap Molly in a foil blanket.
And then...we wait for 30 minutes.

The whole thing doesn't sound that bad, but believe me, it was.  I had to find sitters for the other kids, drive 2 hours round trip, keep Molly from ripping all the stuff off for 30 minutes, and then there is the worry.

Not fun.

Even better, Molly didn't sweat.  So, we had to go back a couple days later, and do it all over again.

I worried the entire week.  I looked up everything I could find about CF, and I kept telling myself that she had no signs or symptoms other than lots of mucous in her sinuses.

To our HUGE relief, Molly's CF test was negative.

Now we were back to the beginning, and Molly was still getting infections and was still miserable.

Next, I took her to see our ENT that did her tubes, as well as Luke's.

He was completely stumped.  In the end, he decided to have her get blood work done for allergies (it is more accurate than the back scratch test), and yes, that had to be done in Salt Lake.

He also decided to swab her sinuses and throat and send in a culture.

4 days later...we FINALLY got an answer!

This all sounds so fast in writing, but this all was over a LONG period of time with a sick baby, and lots of tests and driving.

I was so happy to finally have an answer, even though it is a little bitter/sweet.

Molly has a drug-resistant bacteria in her tonsils, that we can not get rid of unless her tonsils are taken out. 

It is causing all of the infections and problems.

The hang up, is that in order to get Molly's tonsils out, it is a 7-10 day hospital stay and a terrible recovery.

The ENT wants us to do everything we can to wait until she is at least 2, and then get them out asap.

In the main time, we treat the infections as they come.  None of the antibiotics we have tried so far have worked, but he put her on one that has a chance of working, because she currently has a sinus infection.

If the meds kill the infection, we wait and see how long before she gets another infection.  If it is a long period of time, we just keep doing this until she is 2.  If she keeps getting back to back infections, we need to decide if getting her tonsils out now is best.

Molly just finished her 10 days of the antibiotic yesterday.

 The good news:  She has been snot free for almost a week!  This is amazing for her!  She has been happier, sleeping through the night, more energetic, and overall seems better.

The bad news:  Today she is a complete grouch, has the sniffles, is rubbing her sinuses and is not sleeping.  I am trying to stay hopeful, but things don't look good.

I am really hoping she is just teething.  :)

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