Possible Surgery for our baby

Good Morning Team Ella,

Progress for our little warrior continues to be up and down. It seems like every time we take two steps forward we take another one back. I am not questioning God and we are not rushing Ella, but believe me when I tell you things have not been easy here. Our warrior had a busy day yesterday. Her day included a visit from the occupational therapist, getting her hair washed and braided, and doing another trial on the ventilator using lower support settings. For the most part Ella did well during the day. Her numbers looked good throughout the day, she had a productive therapy session and even tolerated getting her hair braided again. However, around 8 pm she started to have some difficulty breathing without the kind of support she has come accustomed to and was clearly very uncomfortable and tired. The doctors increased some of the settings on the vent and by 10 pm she began to settle down and fall asleep more comfortably.

The Plan
The doctors would like to do another couple of trials with Ella on the ventilator using reduced settings. This will continue to demonstrate that when the breathing tube is removed Ella will be able to breathe without the increased support that the breathing tube provides. When the breathing tube is removed Ella will go back to the ventilator using her regular full face mask. This time around, God willing because she is stronger and healthier, she will not face any additional episodes where her lungs collapse or she is unable to breath without a lot of support from the machine.

Tracheostomy
If Ella does not thrive off of the breathing tube, if she continues to have severe episodes of mucus plugging that block or collapse her lungs or she is unable to show signs that she can sustain herself and breathe more independently from the machine than the doctors here in the PICU are clear in their opinion that the next option is surgery.

A tracheostomy is when a hole cut into your throat; it goes through the front of your neck and into your trachea (windpipe). The purpose of the hole is to make it easier to breathe by clearing the airway and being able to attach a ventilator to the hole so that breathing can be supported in a more permanent fashion. A tracheostomy is usually temporary, although you can have one long term or even permanently. At this point if Ella were to have a "trache" inserted we would have no way of knowing when or even if it would ever come back out. We have been told by a number of healthcare professionals that it is possible for Ella to eventually get back to her life as usual even if she had a trache. Eventually she would regain her mobility and be able to get breathing support as needed. 

Team, we are not about to doubt or question God. Whatever His will is that is what it is going to be. At the same time we don't want our baby to have to undergo this surgery. A tracheostomy will change everything for our family. More importantly it will change everything for our baby. We will do it if it means Ella being able to breathe without having to be on a full face mask 24 hours a day and we will survive the surgery and recovery. But make no mistake there would be a hole in our baby's neck and that changes things. She would be at increased risk of infection, she may have to remain attached to a ventilator for most if not all of the day, She may not be able to move around as freely. We trust God. Please pray that His perfect will is done.

Next Steps
At this point surgery is on the table, but not definite. Ella will do more trials today with the breathing tube on lower support settings. If she has another good day and proves she can sustain herself than we will look to remove the breathing tube tomorrow and that will start the clock in terms of whether or not she will have to have surgery. If she does not do well with the trails today the breathing tube will stay in for another few days and we will continue to try and see if she can get strong enough to breathe more independently. If she continues to fail her trails the doctors will look to perform the surgery before they remove the breathing tube.

We know that you have been praying, We know that you have been sacrificing. On behalf of the strongest 3 1/2 year old we all know and love, I am asking you to have the faith of a mustard seed. At some point we have to choose to believe that God's plans for Ella is perfect regardless of what it looks like to us. I am not asking you to stop praying, I am asking you to BELIEVE. Trust in Jesus Christ.

We Are All More Than Conquerors.

watch the video of Ella on FaceTime with her friends from church