Sunday morning started out like no other morning we have experienced since being admitted to the hospital more than a month ago. Sunday morning's chest x-ray showed Ariella's lungs the clearest they have ever looked. Based on this x-ray and the doctors initial exam it appeared as though there was no sign of collapse in either lung and that the secretions were dissolving. In spite of this seemingly amazing turnaround we all decided to maintain our course and leave her pressure settings on the breathing machine alone. The only change would be to wean her oxygen support as she tolerated it. We also agreed to continue her regular respiratory treatments every 2 hours. It is very important that you all visualize just how good of a morning we were having in order for you to appreciate just how perplexing the events that followed were to all of us involved.
Ella got a bath and we washed her hair around 11 am. As we finished up with her bath and hair it was time for her noon treatment. The treatment was going fine until suddenly Ariella began to complain about pain in her throat. We could see that she was having difficulty breathing and swallowing and she was in a lot of pain and discomfort. That simple interaction; complaining about pain and discomfort precipitated a downward spiral that nearly cost us our angel's life. From 12:30 to 6 pm along with Ella we fought to save her life.
Without being here it is very hard to describe exactly what happened, the medical director for the intensive care unit, who thanks be to God just happened to be working today, described the events as "a life threatening aspiration episode". As you may recall from earlier postings aspiration is when contents from the stomach make their way into the lungs. We cannot say for sure, but the prevailing theory at this point is that Ella may have had some reflux or the high pressures from her vent that were causing her belly to distend may have inadvertently pushed some food from her stomach into her lungs. We cannot say, nor do I think we will ever know, definitively what was the root cause. What I can tell you is that I saw my baby go from doing really well....to critical....to near death in a matter of moments. She worked so hard today, from her head to her toes Ella flexed every single muscle she has trying desperately to bring air into her lungs. At one point in time her heart rate was 166 beats per minute, her normal heart is between 100 - 120, she was sweating profusely and turning pale because she was fighting for literally every breath that she took. In the midst of all this Ella was able to ask for her mommy and we were able to connect mom through Skype so Ariella could hear both her parents and her baby brother encouraging (begging) her not to give up. We tried several times with suctioning and noninvasive breathing support to help her resolve this episode, all to no avail. After about an hour of fighting and struggling it was decided that intubation was going to be the best course to help her through this particular challenge.
The intubation itself was fairly routine, however once the endotracheal tube was placed it took us quite a while to position it in such a way that allowed it to work the way it was supposed to. Simultaneous to this Ella needed to be sedated because as the tube was placed and the machine was trying to breathe for her she was actively fighting the machine and putting herself further into critical status. This means that sedation medication needed to be administered through the one and only IV site that she had at the time. As we were giving her more pain medication the IV blew. In other words the IV started to come out of her skin and was no longer inserted in a vein, it was not functional. We were left with trying to add another IV while Ella was in pain and actively fighting the ventilator. All of this while we are still trying to secure the endotracheal tube.
I don't know if this explanation is painting a picture or if this is very difficult to visualize so please allow me to say it another way. Ella is a remarkably intelligent and intuitive little girl. Imagine our little warrior so incredibly scared because she's aware enough to realize that if she can't breathe she can't live and NOTHING we tried helped her to breathe. When the tube was put in, Ella's desire for life was so strong that her instincts to continue to breathe and live kick in. She was unable and unwilling to relinquish her breathing over to a machine and so the only way to truly help her was to sedate her and the only way that we have to sedate her was just eliminated when the IV blew.
Now, I want you to do something with me to help you understand one
fraction of what Ella feels when these things happen. Try to
swallow....you see how you can actually hold your airway closed to allow
yourself to swallow? Now do that again, holding your airway closed for
the swallow but expand your chest as if you were trying to take a
breath....You feel that suction and the biological fear your body
experiences when it cannot breathe? Immediately your heart kicks in like
an engine revving to give you more power, but as long as that airway is
closed there is nothing you can do. For Ella, blockages in her lung do
just that, only there isn't anything she can do herself to get it to
open up no matter how hard she tries.
When I tell you that I thought we were going to lose her three or four different ways this afternoon I'm not overstating what happened for a moment. I can not say enough about the team here at Yale's PICU. Every member of the team, nursing, respiratory therapy, physicians, every was diligent and skillful and compassionate. And as grateful as I am to the people that saved my daughter's life I am more grateful to the one true and living God, Jesus Christ our savior that did not let my baby's body give in and positioned all the right people to ensure her survival.
She was sedated most of the evening and night, but started to come around at midnight and when I tell you this little girl is amazing. As the medication is wearing off she wants to paint and play with stickers. Thank you Jesus.
In church today our Pastor preached a message that has been passing around the internet all day... You + You = you You + God = Supernatural Power. Ariella truly is more than a conqueror through Christ because today Ella + God conquered death and she lived.
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