Brochoscopy

(I actually wrote this on 7/9 but am just now getting around to posting it)

It's 10:10 and Dyl is in Riley Hospital having her bronchoscopy.

I thought they were going to put her under but they aren't and I'm happy about that. Anesthesia in babies scares me. They sprayed some stuff in her nose to numb it (she really didn't like that) and they are going to wrap her up like a tiny mummy, numb her throat and go for it.

She is, in actuality, only about 100 feet from us, through two closed doors. If I listen hard enough I can almost hear her screaming. If she was better able to express her feelings I'm sure she would tell them exactly where they could stick their tube!!

She is 21 months old today. Hell of a way to celebrate turning another month older.

Dr. Kim, who is doing the procedure, said she would be able to tell us if she saw any structural abnormalities in the bronchial tubes at the end of the procedure.

10:20 and it's all over. The nurse who brought Dyl back to us said in about 5 more minutes the doctor would let us know how it went. Dyl's eyes are red and puffy from crying. She got a big teddy bear out of the deal. After they were done they led her to a toy box and she grabbed the bear. She has already become very attached to the bear because she won't let me have it to take the tag off of it's ear.

I'll be back after the doctor speaks to us.

Okay, so at least we know what's wrong now.

There were no structural abnormalities. Thank you God! No tumors or masses. Just lots of gunk. The doctor said that of the 15 minutes they had her back there, they spent about 5 minutes just suctioning crap out of her airways. Her trachea is inflammed. You are supposed to be able to see cartilage rings down there. You can't. Her adenoids are huge, but her tonsils are small. There is some lymphoid enlargement. She also said that with the sheer amount of secretions that there was bound to be a bacterial infection somewhere in there. All of this adds up to a diagnosis of severe asthma. More severe than originally thought. I know asthma is a dangerous condition, but I have to honestly say that I'm happy it's "just" asthma. This is something we can deal with. They started her on an inhaled steroid and a 14 day course of Augmentin for the probable bacterial infection.

On the way home she slept. We remarked that it was the first time in a long time that we couldn't hear her breathe while she slept. She didn't rattle, gurgle or wheeze. Unfortunately, that won't last because the gunk will build up again. If the new medication works, the inflammation will subside and she will be able to breathe easier. I wonder if removing the inflammed adenoids would make a difference. I have to remember to ask Dr. Montgomery that at our follow up appointment.

We've been told by the pediatric pulmonolgist that the asthma is likely the result of her bout of bronchiolitis at 3 months old. I had to fight like hell for 4 days and give up Jay's birthday (We spent the night of his birthday in the ER with Dyl while he was home with the neighbor.) to get her admitted. She was breathing more than 60 times per minute and didn't pee for 36 hours. At the time I felt like they admitted her to shut me up. And maybe they did, but that baby needed to be in the hospital. She spent 4 days there.

Anyhow, the WWWD (What's Wrong With Dyl) phase is over. At least we know what's going on now. I'm thankful for that. We will deal with this.

A great big thank you to Dr. Kim and the nurse who assisted her. I'm so sorry that I didn't get her name. You both were great!

Dyl's Gastroscopy

The drive to Riley today was filled with shrieked demands of "ba boo!!" but since she can't eat before the procedure, we had to placate her with her favorite stuffed puppy, which mostly worked. This puppy has gone with us to Riley almost every time, so I think we will start calling it the Riley Dog or something like that! She actually fell asleep in the car, which is unusual for her, but when we had to stop for gas she woke up screaming "ba boo!!" all over again. But she quickly found a picture of an apple on the building and started saying "Apple! Apple! Apple!" which actually sounds more like someone holding their tongue with their fingers and saying "Apple."

10:10 AM - We are are Riley Radiology now and her appointment is in 5 minutes.

10:45 AM - All done!! We went down today with the expectation that she would be under anesthesia and would have the tube stuck down her throat with a little bitty camera and they would have a look around. After all, isn't that what gastroscopy usually means?!? Nope, not today! Instead, they gave her some barrium to drink and x-ray'd her while she swallowed it.

The good news is that they did not find any evidence of structural abnormalities in her esophagus or stomach which means she is likely not aspirating her food. Rule that one out.

We have a follow up appointment at the end of May, so I guess we will just wait until then and see what they want to do next.

The Beginning

Ok, so I know I didn't start this blog "at the beginning" like I'm sure I'm supposed to, but hey, that's a working mom's life. Besides, inspiration is a funny thing.

Let me give you a bit of history, then we'll get to the present.

My name is Michelle, but most people just call me Chelle. I live in the (usually boring) midwest and am a nurse. My husband is Bryan and we've been married for 5 years. I/we have 2 kids.

Jay (not quite his real name, but what he prefers to be called!) is my 10 year old son from a previous relationship. He is in 4th grade. He plays violin (God bless him for trying anyhow!) and loves to do anything outside. He is a typical boy in that he is constantly a mess. And let's not talk about his room!! He's my buddy - we've been through a lot together! Oh, and one minor detail that makes life with him interesting...he has ADHD. One of his favorite jokes is,
Q: "How many kids with ADHD does it take to screw in a light bulb?"
A: "Wanna ride bikes?".
If you can't laugh at yourself, then who can you laugh at?!? He's a perpetually happy kid and exactly 1/2 of the reason I find to smile each day.

The other half of my reason to smile is Dyl (as in Dill pickles!!) - our daughter. She is 18 months old. She was actually my inspiration for starting this blog because of problems we've faced with her health. I'm sure you don't want all the details, so I will just give you a brief run-down.

At 3 months she was hospitalized for 4 days for respiratory distress. She was tested for RSV, twice, and was negative both times. Since that hospitalization she has had a chronic cough with lots of junk that comes up, wheezing and kind of a general bubbly/rasping sounding chest. She has seen different pediatricians and Immediate Care doctors for problems with breathing and we've always been told that A) it's a virus and it will go away or B) it's bronchitis and here's an antibiotic.

As any parent knows, you can only be brushed off so many times before you lose faith in The System. I was talking with another nurse/friend of mine who works for an allergist and she stuck Dyl on their schedule for the next day. This doctor diagnosed asthma and gave us medication to alleviate symptoms. We saw an improvement and were encouraged. Then she got a cold (or some virusey type thing) and we saw the same symptoms again. This time the symptoms didn't go away no matter how many nebulizer treatments we gave her. There was mild improvement, but only for an hour or so.

Then back we went through the gauntlet of antibiotics, but this time they added a twist. They threw in some prednisone. Even that didn't make much improvement. Eventually, Bryan got frustrated enough that he called Riley Hospital for Children in Indianapolis and asked if we needed a referral or if we could make our own appointment. As it turned out, we didn't need a referral, according to Riley, and our insurance didn't require one either, so we were directed to Dr. Greg Montgomery, a pediatric pulmonologist/allergist. Now, it's been pretty boring reading so far, so let's throw in some trumpets for fan fare and in my biggest booming voice, I shall announce...

The Riley Chronicles

Dr. Montgomery is a fantastic, personable, warm man. He instantly set us at ease and matter-of-factly told us that he would form his own opinion based on what we told him and what he saw. I know, that's his job, right? But in our experience some docs don't. It's worth mentioning that on her first visit with Dr. Montgomery, which I was unable to be at, she was tested for Cystic Fibrosis. Bryan quite casually sent me a text message saying only "Cystic Fibosis." It's also worth mentioning that he had no idea what it was and so wasn't nearly as alarmed as I was. Alarmed isn't really the right word...more like TOTALLY FLIPPED OUT! Thank God the test was negative, so that's one thing off of the Possible Problems Checklist. So The Riley Chronicles will be updated as required by our visits there. Today's visit will be a separate post entirely.

If you've made it to this point, just let me say thanks for sticking with me this long!