Airway update

I haven't updated because frankly I've been pissed. I have a lot of anger. Don't know where to direct it or who exactly is the source but what I do know is that my kid is the one paying the price. My advice to my friends in healthcare: please remember that it may just be a job to you but the patients, especially pediatric, are someone's baby' and there is no prioritizing when it comes to a child's health-every little detail is important. To my physician friends: I know many of you are clinical thinkers and excellent surgeons but one thing that can't be taught is bedside manner. Please tell your patients the honest, conservative, REALISTIC answers. Though some may look to you for all of the answers I am not that naive. I know that every case is different. I'm just looking for a ballpark-an educated guess that would help me to plan and prepare my family for the aftermath of the next big change.

When we left the NICU we were told "he will not be trached, he just needs to get bigger". When we saw our first pulmonologist we were told "he should be trached-prepare yourselves-when he gets the slightest sickness it will happen". When he got trached we were told "it's only for a year and he will be on room air". Once he became ventilator dependent we were told it would be just a short time. When we transferred him to CHOP we were told he would need major airway reconstruction for the first time. And finally after the recon here we are with today's biggest frustration... Being told that the Trach would be out close to Thanksgiving and then yesterday being told the spring. I just can't take it anymore. We have been so patient and worked so hard to get to this place and while it might be the right choice clinically I am irritated that once again I have been mislead, gotten my hopes up, prepared emotionally, prepared my family and my household an ultimately been let down again.

I was told by a speech therapist about Brody's very raspy and poor quality of voice but were lucky he has something... Hmmm... When it comes to the quality of the rest of your child's life and the first 3 years of it have already been tarnished beyond what most can imagine, I'm really not a fan of hearing that voice is secondary.


- Posted using BlogPress from my iPhone