Thursday, April 30, 2009

I want my Ava back

This is the third entry that I have written for this evening. Each time I have struggled with what to write, what to share, and what to keep private. My internal debate struggles between trying to be supportive, trying to give hope, trying to be the historian of this tragedy, and just trying to tell things how I see them. I will likely fail at some point if I try to do the first three. It seems to me that the beauty of something like this is the rawness of it. It is up to you to do with it what you will. It is up to you to see the goodness or ugliness of it. It is up to you to decide its value and impact on your own life. It is up to you how your life will be different because of it, if at all. I can only tell things how I see them. So this is how I see them…

Ava is still in bad shape, despite the gains of the past week. I think that it is important for you to understand Ava’s condition so that you can have a framework from which to work. Ava opened her eyes for the first time just a few days ago, and this was an amazing achievement, especially given that the discussion in the ER Thursday night was, “Prognosis is very poor. She likely won’t survive.” Ava has suffered a tremendous head injury and has an infarcted (dead) area of brain as a result. (We discussed this two days ago… the occipital lobe infarct). While Ava has opened her eyes, it is not the same as when you wake up your two-year old and they are a little disoriented. They look around the room a few times, thinking “where am I?” Looking inquisitively at you, thinking “who are you?” You know that they are registering their environment and will make the connection very soon and be the same loving child that you knew before they went to bed the night before. This is not so with Ava right now. She can open her eyes but stares blankly ahead. Her eyes do not track and it is unclear what she is registering. She has some spasticity of her arms and legs. Her fists are clenched tightly. Her arms are tense. Her legs are firmly extended and her toes pointed, as if she were trying to stand on her tippy-toes. These things are the result of a bad head injury. I am not trying to bring you down, but it is important that you know the reality of what is ahead of this family. Ava will survive, this is clear… and for this we must thank God, but the road that is before them now will likely be long, and all of us will be needed.

Ava has already had special shoes ordered to help flex her feet into a normal position and help minimize the contractures (shortened muscles) that will likely result from her immobilization and spasticity. The necessary physical therapy will be demanding. I helped flex her legs and arms yesterday. This is not like moving the limp arms and legs of your kids when they are asleep. This is the equivalent of you trying to move their arms and legs when they don’t want you to. Please do not be lulled into thinking that the sequence of events will be… 1. “72 hour window.” Check. 2. Extubation. Check. 3. Go home and life is grand again. This child has a lot of recovering left to do, and there will be many difficult days ahead for Traci and Manny both. We cannot forget this. They will need us even more in the coming months.

I went to the hospital to see Traci, Manny and Ava this evening. Jennifer had told me earlier in the day that Ava had several seizures through the night and that as a result, she would not be extubated today. I was disappointed and reminded of a conversation that I had with Traci last Friday evening. “Fred, do you think that she will be alright?” “Yes, but it isn’t going to be easy all of the time and it won’t happen right away. Recovery is often two steps forward and one step back.” This is how the past two days have been. Yesterday we were all so hopeful that she would be extubated today, only to find that not only was she not extubated, but now she is having seizures! One step back.

Ava was started on an antiepileptic medication today because of the seizures. As a result her ability to breathe on her own was affected early in the day, and she was not able to be weaned from the ventilator. She just couldn’t wake up enough to do it on her own. Her doctors offered to try again later in the afternoon, but Manny declined out of concern for her tiring-out and then needing to intervene in the middle of the night, when there is only partial staffing to address the problem. It is almost always better to address these issues early in the day, when there is full staffing, their minds are fresh, you can be better rested and have your wits about you in the event that you need them.

When I arrived in the PICU, I saw Traci sitting in a chair facing Ava’s bed, holding Ava. Ava was reclined across Traci’s lap and facing the doorway. The green and yellow lights of the multichannel IV pump was a backdrop, silhouetting her head. Traci had clearly just been crying. Her eyes were still wet and her face was somewhat reddened. Traci had her left arm supporting Ava’s head and neck and her right arm wrapped gently over her, caressing Ava’s arm and face. The endotracheal tube remained in place, with the piston-like sound of the ventilator in the background. Manny’s mom and Traci’s aunt Diane were standing off to the side of the room. Everything was so quiet. No one was speaking. Manny’s mom was standing to the side wiping a tear from her eye, watching Traci. Aunt Diane was also watching her, silently. The nurse was at the head of the bed adjusting the tubing from the ventilator. Traci was staring at Ava through teary eyes. I felt like I had just walked in after some terrible news, and that I was the only person in the room who didn’t know. I waited there quietly for several minutes before anything was said by anyone. I couldn’t help myself any longer, “How is everything?”
As it turns out the tears were joyful, as Ava had just been put in Traci’s arms again for only the second time since being hit by the car last Thursday. We sat and talked for a little while. Her emotions ranged widely. Anger and guilt, sadness and joy, hope and sorrow. So much pain still encircles them. So much uncertainty still lies before them. It is my belief that we need to continue to encourage Traci and Manny to talk openly about these things and not try to fix them. They are entitled to their sorrow and need to get it out if they are ever going to be able to get past it. But what do I know?

I just know that I sat there with Traci tonight as she cried, “I want my Ava back,” and realized that I couldn’t make that happen. All I could do was listen, and that that was okay. Please continue to pray for them and hope that tomorrow we take two steps forward.


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