Communication Is Key

Today was full of planning for the move to the ward, and preparation for what is to come for Olivia. Unfortunately not everything was communicated from one person to the next. We first heard that Olivia would be moving from the Peds ICU to the Peds ward from the surgical resident very early in the morning. The surgeon was to come in around noon and give us the go-ahead to begin the tube feeding. Meanwhile the ICU was preparing for us to leave to go to the ward. The surgeon didn't come until much later, which also delayed the transfer. That was only the beginning. We spoke with the nutritionist and her recommendation was to have Pedialyte as the first thing through Olivia's tube, followed by Pediasure 1.0. After a certain period of time, which I do not remember now, she was to be changed to Pediasure 1.5. I believed that was understood by everyone. However that was not the case. I had anticipated that the first feeding would happen soon after she was transferred to the ward, but it did not happen for over 4 hours. It wouldn't have seemed so bad if it weren't for the fact that she hadn't eaten in 46 hours. Granted they were giving her IV fluids to sustain her, but it isn't the same thing. And when they did start the feeding, it was not according to our understanding. We had no idea what had been communicated, except that it was not what we were told. Finally that was sorted out, and she began the tube feed. It works similar to an IV pump, pushing the nutrition Olivia needs into her. I don't know if it was exhaustion, relief, or some sense of mourning that caused it, but I began crying as the pump began to run.

As I am typing this, the situation is the same... tears again. I do not understand why. Perhaps it is a feeling that part of the normal life we all hope for has slipped away. Not just anyone can take care of Olivia anymore, even though I know that has been the case for some time.I am relieved, though, that things have gone better than we'd hoped.

It is frustrating that some of the hiccups we've experienced so far could have been avoided by better communication. I am learning to better communicate as well. I chewed out two different people today, innocent in the situation, of course. I actually said to the one guy, "I'm not a difficult person, just a really mean Momma Bear". He said he understood, but it's hard to expect someone to be so understanding when you don't get it yourself!I'm hoping to sleep well for the next few hours. I'm late getting to bed, but I wanted to get this written. Tomorrow is a new day!