So where was I? Oh yes, I signed and vowed. Signed and vowed. Well that wasn't enough. I knew we needed further guidance - from people who understood what we were going through. We needed a group who we could talk to, people who would empathize. Those who would be able to help us with our goal for Aviana, that being comfort above all else.
It took me some time to recover from that week at Kaiser. I didn't do anything at first. I think I was shell-shocked. I haven't written about this once, as I was and still am so deeply affected by it. Like I said, when something truly rocks me, I turn inward. So much so...I can't even utter a word about it. I stuck up for the doctor who did the liver biopsy to everyone I knew. He was by far Aviana's best doctor! He loved her, and us, always.
Every time we came back from The Institute, he was right there waiting with opened arms and as supportive as could be. Please understand, often times, traditional doctors don't always embrace what they at The Institute are doing, or prescribing. I always appreciated our doctor because he had an opened mind and saw that it made perfect sense. Above all - he wasn't too proud to admit that what The Institute recommended for her diet and well-being was working over what they at Kaiser were attempting! For that reason, he always ordered all the insane amounts of blood work we needed, and did everything he could in support of our efforts to and from Pennsylvania every 6 months, etc. He and his office were Johnny on the Spot, they were like white on rice. I made sure to always let them know how I felt about them. In fact, I made a point to skywrite it all over Kaiser! That's how much I loved this office.
So when all this went down, he was first and foremost still our doctor! I think you all know my take on things and I'm the first to always say - accidents happen! Things happen! We are not perfect beings! If you've escaped things, it's by some sort of grace, but this all could very well happen to you too! Well that's the same take I had about the failed liver biopsy. I still loved this doctor and I knew full well it was an accident, and was treating it as such. Of course I wasn't thrilled with all Aviana was potentially about to embark on, so that is the reason we had to back up and re-evaluate the situation. We explained our reasoning to all of the doctors involved, and our main doctor seemed to understand with his entire heart. He even said if in her situation he wouldn't want to live that way and has made it known to his wife. So I knew he understood where we were coming from.
After the family meeting, Aviana was rushed back into surgery. As the worst week pressed on I continued to see Aviana's other doctor whom I also love, but someone was clearly missing and in a big way. I gave it time. Scratched my head. Looked at Aviana lying there day after day. Felt really lonely. Finally, as the week was closing in, my sadness turned to anger. Where the hell was our doctor? The one who has loved and supported us most in the last 3 years? The one who has been there for us? I had to get out of there. We had to get out of there. On the second to last day, when something so traumatic happened that I will never write about it, my anger turned to downright rage. Why hasn't he even bothered to check and see how we are doing? Just once?!? Why hasn't he even picked up the phone to call? Where was Johnny, the star of Johnny on the Spot? I felt so betrayed.
After many days home from the hospital, he finally called to check on us. I was flat and deflated. Indifferent. He asked if I had any questions. I said, "we're fine, no questions" and basically hung up soon after. I was instantly pissed at myself. Idiot. That's not at all who you are. My heart was racing. I quickly gathered my thoughts. I wanted his honesty. I really wanted to know the truth. I wanted to hear his heart. We had come too far to go down like this. I decided to ask my one and only question gently. I wanted to truly know, my gosh...I needed to know. I called right back and said, "yes, I do have one question. This was one of the hardest weeks for our family and I just wanted to know, where were you?" He said he was in some meetings, then on vacation, then asked if I saw someone from his office there, because he asked this person to represent his office. I said no, I didn't see or hear from anyone from his office. I could not believe my ears. So much flashed before me. My eyes were stinging. Not yet. After everything we had experienced - meetings, vacation, and the tone of his voice, so nonchalant. I explained I had my answer, I understood. Before I could even hang up the phone, the tears. Our perfect relationship was over. All of the support I once knew for our daughter, up in smoke. I hung up and crumbled.
I was left to wonder. Wonder: was this whole situation too much for him? Especially when we decided to maybe let her go? Doctors are used to fixing, fixing, fixing. He was the absolute perfect doctor with a spotless record; did this rock him in an indescribable way? Did Kaiser ask him to take a leave after what happened? Did they ask him to keep distance from us? Was it true that it would have been like burning her at the stake? Was that total cya? Why did I stick up for him, when he couldn't even check on us once? Were all of our best doctors looking out for our best interest? I'd like to think so. Am I naive? Always like to see the good in people? I've kind of always been that way, but this whole Aviana thing has made me grow up some, and open my eyes. I so love this group of doctors, so in the dead of the night, when everything is quiet and the thoughts start dancing...I sure hope everything was handled with only love and good intentions. I still miss our main doctor so much, and that is why the pain is so deep. A piece of my heart is broken.
I once again veered into the unforeseen, so I never got to what I meant to write about.