Making the decision to have a child – it’s momentous. It is to decide forever to have your heart go walking around outside your body. ~ Elizabeth Stone

Friday, June 19, 2015

Day 9

Today we made further progress in the right direction. Elijah had his pacer wires pulled and he has continued to be weaned from the many IV medications he was on. His chest tubes are putting out considerably less fluid. One of the nurses even said that she thought that they might pull them tomorrow. I try to not get my hopes up.

Elijah's spirits are still quite low. When I got to the hospital early this morning he was a big teary mess. Dion and Elijah had a rough night with the night nurse. Although we very much appreciate the care from everyone here at CHLA, a night nurse can make or break your night. Some night nurses "batch" care and time everything so that they only interrupt every few hours. Other night nurses like to stay busy and therefore are constantly in and out of your room messing with everything from the patient to stocking supplies. We had the latter. Which led to our emotional, upset little guy this morning. No sleep equals a very unhappy little boy.

We tried to pick up spirits. Dion went and got his favorite meal from "the sandwich place" ie Jersey Mikes. That made all the difference. The nurse allowed us to eat as a family at his bed and man did that make him happy (you are not allowed to eat in the CTICU). The nurse even had the doctor put orders into the system allowing us to eat as a family at bedside. He had not eaten all morning and the doctors said that they really needed him to eat before they would consider taking out the tubes. Apparently when you start eating you can start putting out more fluids. They need to see if the fluids increase when he eats. After he ate he got some pain meds and took a nice, long nap.

At this point we are in a waiting game. We are waiting for the chest tubes to get pulled, waiting for the oxygen to be further reduced, and waiting for the IV meds to be weaned.

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