Thursday Day 3 in PICU

Today has been a hard day for Emylie. Her breathing has still been labored, she has been on 7 liters of oxygen with sats ranging from 88-91%. (To give you and idea - she usually is not on oxygen while she is awake and up to a 1/2 liter while she is sleeping with sats 91-100%). At times she has been up to 10 liters. Her chest x-ray this morning looked worse than yesterdays.
It was decided that she needed a larger trach. That even if she was healthy she probably had outgrown the one she was in. At about 11:00am they put a 4.0 trach in. Everything went smoothly - a big relief! We saw some improvement, she was sleeping. I stepped out to get some food, came back and Emylie was on a different ventilator. I felt terrible I wasn't there for her while they were changing this around. She was also on 100% oxygen. With the oxygen and ventilator she still wasn't ventilating well enough. So they decided to put a cuffed trach in (once you get the trach in her trachea a small balloon is filled which doesn't allow air to go up past the vocal cords and out the mouth and nose). The nurse and the respiratory therapist were changing the trach, the attending doctor, Dr. Larsen was watching and advising and I was trying to offer comfort to Emylie. They put the trach in and they were not able to suction her. They tried again and no success. Her sats were dropping. I was so glad to hear Dr. Larsen tell them to put the other trach back in. I grabbed a new one and handed it to them and it smoothly went in and her saturations went back up. Reinforcements were called in (i.e. Chris Hartling - the most amazing respiratory therapist and source of comfort available to a parent of a trached child. She is wonderful). She had another cuffed trach to try and she came and put it in. That trach change went well. So within 3 1/2 hours Emylie had 4 trach changes. And unfortunately with the cuffed trach she will not be able to talk. :) I am grateful that as she gets better she will go back to her regular uncuffed trach and be able to speak and sing. Emylie is a trooper and AMAZING!!! Her fever is back up to 39.1 C (102.4 F). They did another chest x-ray and that showed some improvement over the one this morning. She is sleeping now and looks as comfortable as possible considering what she is going through. She has Minnie by her side and her jacket next to her pillow. She is ready to go home. I pray that the 2nd half of the day will be better and that she will be on the road to recovery.

A cute storie...last night when Dave got here she was tired and bothered by them tech poking her finger and the treatments and whatever elese that was happening at that time. He got "Peponi" on his phone (Emylie LOVES this song...) and for a little girl that didn't talk very much through the day or say a lot she calmed down and with her binky in her mouth sang, "Pepo, pepo, peponi, pepo, pepo, peponi." She is cuter than words can express and I love her more than words can express!