The News

On Tuesday of last week:

Brett and I took our little Carlyn to Sutter Memorial Hospital for her Bronchoscopy. She had to fast for 6 hours before her surgery and was perfectly happy and patient the whole morning while her nurses prepped her.

Look how teeny tiny she looked in her little gown and hospital bed. She is just so small and it was a little sad for us to see her like that. Her nurse was a cool guy who brought her lots of toys and the even brought in the little bear slippers she's wearing below. He put some lanacane on her arms to get them nice and numb for her IV (smart thinking) but when it came time to find her vein he was a pro and got it on the first try. Then we met the surgeon and his associate doc., waited a while and then brought her into the procedure room at 9am. They explained how the anesthesia works and it took effect exactly how they explained it would(they put the drug into her IV and she squirmed for about 10 sec. and then bam...she was out) then Brett and I waited for a bit until they were done. Seeing her afterward, still asleep and with the oxygen mask on was unreal, again, she looked way too small to have all the wires and monitors attached to her. Aside from taking a little longer than expected to wake up everything went very well.

Follow Up Appointment:

So last Friday after Carlyn's lab results were in we went back to see Dr. Chipps (her respiratory specialist) She was officially diagnosed with a respiratory disease called PBB (protracted, or persistent bacterial bronchitis) Here is what that means in a nutshell:

Carlyn has a very low number of Macrophage White Blood Cells (which are a huge immune defense system in the lung, they are like little immuno-pac men that engulf/kill bacteria, remove cell debris and stimulate other immune cells to respond to pathogens) Obviously it's more complicated that this but I didn't feel like blogging all the scientific stuff

The Good News First:

Most often this disease will self correct with age, usually by around age 4

Not Such Good News:

There is not a cure for it. Which means that our baby is going to be getting sick A Lot (like right now she sounds extremely raspy and wheezy) There is also no way to prevent her from getting bacterial infections, over and over again :(

So here is what we do....

Antibiotics, long doses of them. This will help keep numbers of them down for temporary spurts. Inhaled drugs won't do her any good and neither will steroids (which if you read past posts this all makes sense since the poor girl was on every drug under the sun and sounded just as bad as she does today).

So since we can't keep her in a bubble, we just need to take some extra measures to "try" to keep her healthy (yes, I do realize how ridiculous that is since she has two brothers who go to preschool, and lets face it bacteria is everywhere)

Now we just hang on until our next visit-she's on three weeks worth of Sulfa antibiotics then we'll re-assess with Dr. Chipps in three weeks, she is going to be his best little buddy in his office all the time!

How we feel: Extremely relieved that we have a diagnosis/direction with all this. I think it stinks that it took us over a month to find out since we gave her so many drugs/lost sleep doing unnecessary breathing treatments etc.

This is what the Dr. said to me as he walked out "I am giving you (meaning me and Carlyn) the best news with what her set of symptoms are. There are very few diseases that self-correct, I'll see you in 3 weeks" That is exactly how I felt, not happy with her symptoms, not happy they can't just give her something to fix it.

But SOOO SOOO happy that my precious daughter will not be sick for her whole life, all Brett and I want is for each of our children to be happy and healthy and loved. Nothing is anatomically wrong with her lungs, that was huge happy news too! Now we just have to get her sweat chloride test for cystic fibrosis done which I honestly feel like at this point they just need this in their records to cover themselves, everyone in the fam did lots of research and we took a vote-she doesn't have it ;) (because we clearly know what we are doing, hehehe)

Anyways,

I feel like it's relatively good news, like I said before it could be WAY worse. Carlyn is a ray of sunshine in our lives and are lucky to spend our days among all the blessings she brings!