Friday, July 31, 2015

Oh the things you learn while inpatient

As we were sitting in the waiting room of the pediatric OR yesterday morning I couldn't help but over hear the stories of what other families were there for. Eavesdropping is, admittidly, one of my favorite things to do when in this situation. I love to listen to other people talk about their life issues. I know it's bad, I know it  makes me a nosey person, but ya know what, I don't really care. It can also put my life into perspective, you can realize that what you are currently going through is nothing compared to what others are going through. The last time we sat in this waiting room there was a family with a young child going through brain surgery to remove a tumor, Zach was getting his g-tube placed....made Zach's surgery seem like nothing. This time it was the complete opposite. We had to sit near this couple who were obviously lower income (not judging, just stating), their (I assume) infant/toddler was in surgery and they were obviously very concerned as this was apparenetly his second one (all gained from eavesdropping). When the doctor came out to talk to them I was a little floored, and slightly irratated by their behavior, when I heard the type of surgery their son was in for and some of the questions that followed from the parents. Simply procedure, common procedure, procedure that fixed immediately what the problem was and the child would have no further problems. You would have thought their child was having major surgery, might not survive it, would have life long complications with how they had been acting. I understand that all surgeries, especially at such a young age can be complicated, and I realize I am probably a little jaded when it comes to the simple problems in life, but seriously these people where overboard.

As I was falling alseep last night I realized a few things that the day had taught me.

1.) There is always someone worse off then you. This time, from the conversations around us, we were the ones "worse off". The simple procedures, the fixable problems, the minor illnesses that go away in short periods of time.....there are so many days that I wish for those problems. Instead we were handed Cystic Fiborsis, a life filled with daily meds and treatments that take up hours of your time, chronic respiratory infections that can kill, ruined summers/holidays/vacations, lengthy hospital stays, countless clinic visits, panic when lung functions drop below optimal, always wondering if this is the beginning of the start of the decline that will lead to oxygen tanks and eventual lung transplants (yes I am a pessimist).

2.) Doctors "forget" to order/do things. Yup you read that right, they forget, they are not perfect. We had planned with the doctor for Zach to come in and have a brochoscopy, have all the crap cleaned out of his lungs, have a PICC line place for 3 weeks of antibiotics, stay here for 2-5 days and go home with PICC for remainder. All the doctor put in the order for the OR was the bronchoscopy, didn't surprise me there the last time we were here they "forgot" to put in the order for him to be admitted after the g-tube placement. Once on the floor, talking with the respiratory therapist we realize that the doctor had also failed to order the new nebulizer that we decided to start Zach on during this stay. All in all though everything did get done that was suppose to. I guess our new CF doctor is known for not putting orders in and saying "oh yeah, by the way, we are doing this too". But I like him, he is aggressive, proactive and he listens to us.

3.)Momma instinct are ALWAYS right! I told the doctors MONTHS ago that Zach needed a tune-up and they kept handing him oral antibiotics because he wasn't culturing anything new. No he wasn't culturing anything new but his cough was horrible and wouldn't go away and he was not himself and he had lost a 1/3 of his lung function.....1/3!!!!! That is a HUGE lose for anyone especially a CF patient! I was vindicated when the doctor came out of the OR and told us that we had made the right choice. He had removed "copious" amounts of thick yellow mucous from Zach's lungs, lungs that were severely inflamed, lungs that looked like crap on x-ray, lungs that could NOT take deep breathes. All this mucous was just sitting in his lungs, causing damage while doctors played "I know best" with my child's health. And just because his sputum/throat swab wasn't showing nothing new growing that doesn't mean that there isn't something different in all that crap they  just removed from his lungs (still waiting on those results)

4.) Sometimes nurses just aren't a good fit for certian floors. Our first nurse yesterday was floated to this floor from her normal floor. I don't think she has had a lot of hands on experience with CF kids or their needs. Don't get me wrong, she was a good nurse, but when she looks at my 14year old CFer who is refusing to eat his dinner because there is cheese on his hamburger and she rolls her eyes and says "can't you eat the cheese" and then proceeds to tell him "I'm sorry the kitchen closes at 7 (he was alseep when his dinner came) and we have no other options for you". Can anyone tell me how many mistakes where in that sentence of hers???? 1-never roll your eyes at a kid just because they are a picky eater. 2-never tell a CF kid, or really any kid, that they will just go without because "there are no other options for you" and 3-THERE'S A NUTRITION CENTER ON THE FLOOR THAT HAS "SNACKY" TYPE FOODS (mac&cheese, cereal, pbj etc.)! Needless to say momma found a pizza place nearby that had garlic pizza and that was what Zach had for dinner.

Let's see if day 2 inpatient teaches me anything more :)