Communication is Key

About 14 hours ago I made my first blog and was overwhelmed with emotion, as Meli asks "why are you so so excited mom?" I instantly paused and had a moment of realization. I thought to myself, how in the world do I explain this to my little 6 year old that processes information like a wizard and shoots back with questions I wouldn't even think about until way after the fact...I pondered for a few minutes and told her to hang on while I gathered my thoughts and finished what I was doing. I realized I didn't need to over think this or analyze it from different perspectives, I just needed to explain it in a way that she would somewhat get the gist of it all. "It's like a journal for Mommy, I will be able to update everyone that loves us and cares about our family on how things are going with Little Livy as well as let them know what our family is up to". That made sense to her and all was well .... until my 18 year old sister Lia jumped in the conversation and offered to help with things on the back end of the blog as I finished dinner. She pumped us up and got us excited about how many views we were getting, which was very exciting I must say...but now Meli thinks we are going to be famous...haha! As a mother I have learned that sometimes you have to pick your battles and I reassured her, that wouldn't be the case anytime soon, but she could dream of it..haha.

Then the phone rang and it was the Dr that I had been waiting for a call from since Monday afternoon. I had called multiple times throughout the day (Tuesday) having to leave voicemail after voicemail as the office phone was turned off. I was eager, to say the least for updates on Livy's blood work as last week her numbers started to go in the wrong direction. As I greeted her Dr, I was thrown off by her response "Did you make it in on Monday to get labs?"...I instantly knew something was wrong making me speechless, I still found it in me to respond and continue on the conversation as my heart sank deeper and deeper into my stomach. The end result was that the lab tech released the wrong orders and they were calling the Dr to resolve the issue although they couldn't get a hold of her, causing them to waste Livy's blood. As I gathered my thoughts I couldn't believe what just happened! How could it be that in such an amazing hospital, with such sick kiddos that communication falls short time after time and there's nothing we can do? 

You may be thinking to yourself, "It's not a big deal Cassandra" or something to the effect of "Oh man that sucks, but it could be worse" although we have been through the ringer when it comes to the many, many mistakes and errors that have been made throughout Alivia's inpatient care and now outpatient care at the hospital. From giving her too many meds (3x her correct dose), to assumptions being made without going through her chart to verify first, to residents putting in the wrong orders causing me to push back and have to know the ins and outs of every move they make... I am exhausted and just want to know what is going inside my little baby girls body. Can you imagine what Livy has to think? This isn't right! My job is to be her mother and advocate, but I feel as though I am needing to keep things straight for the medical team as there is "errors and issues" with their systems and I constantly have to correct them on whats happened and what the current plan is. 

The only resolution the Dr had for me was to go to a different location to get blood work drawn in hopes for a better experience. For me that wasn't and isn't enough, as I believe Livy deserves a break, but we need results..... so in we go. 

Communication is key to any profession, relationship and day to day duties that you find yourself apart of. If I have learned anything from all of this it is to take the extra 5 seconds to double check that you have relayed and received accurate information with anything you are doing that includes peoples time, feelings, values, and anything else that could be important to them, that you could cause harm in by failing at communicating.

With that being said make it a great hump day, once I have results and an updated plan I will be sure to update! Please continue to send positive thoughts, prayers for not only Livy but everyone in involved in caring for her & as always thank you for being our support system by helping in any way!

Xoxo,

Cee Cee