PICU (pediatric intensive care unit)

Peace and Blessings Friends and Family,

Rachel and I wanted to share the latest happenings concerning our dear Ella. I am sorry that we are not able to respond to every phone call and text message, we hope this way helps everyone feel included. We are so grateful for your interest, support and most of all prayers to God for our special little lady.

To bring you up to speed, Ella was born with very low muscle tone and as a result was never able to successfully feed through her mouth. Her body also develops more mucous and secretions than she is able to manage through swallowing. Over the last several months she has made some improvements in her development, she holds her heads up a bit, she can push herself up from a sqaut and she can even grab toys and move them back and forth between her left and right hands.

Ella is so strong and so determined. Through all of her developmental improvements we have contiued to search for answers. Last Friday Ella had a scheduled surgery where she was going to receive a Mic-key button,(an easier to manage feeding tube) we also scheduled her to receive a muscle biopsy that would hopefully gives us some answers. The surgery went well and she seemed to recover after a couple of hours of observation. I will say more about the amazing care she has received from the staff at Connecticut Children's Medical Center in a later posting - let me just say these folks are amazing blessings in their own right. We brought our baby back home Friday evening, however she did not sleep very well Friday night and never really settled down Saturday during the day. After several attempts to help our baby manage her new increase in mucous and secretions we took her to the CCMC emergency room.

The emergency department triaged Ella very quickly and had us placed in trama room 1 where we received treatment right away, it was there that Ella was diagnosed as being in respitory distress. They started her on oxygen right away and shortly thereafter started a respitory treatment called CPEP, which is meant to force air and pressure into her lungs, thereby inflating them which would hopefully clear up the mucous secretions that currently blocking the air sacks in her lungs.

From the emergency department we were admitted to the pediatric intensive care unit, or PICU where Ella has remained since Saturday. She continues to receive respitory treatments as well as medication to dry up the extra mucous, she is also suctioned almost hourly. Suctioning is when a respitory therapist uses a small vacuum tube to forceably remove mucuous from her lungs and throat by inserting a small tube down her nose and throat, mom and I have our own suction machine and have done this on Ella many times in the past.

Her x-rays this morning showed that the upper portion of her right lung and lower portion of her left lung still have clogged air sacks. They are trying a new medication to loosing the mucous as well as increasing the frequency of her respitory treatments, which include PT or physical therapy. This is when the respitory therapist using a small recussion cup taps the baby's chest to loosen the mucous. It sounds worse than it acutally is, she loves it.

Continue to check the blog often for new information and stories of encouragement and inspiration. Through Christ Jesus Ariella is more than a conqueror and so are you.