Welcome to the continued story of Alexander Michael Zarzana. A five year old boy who endured brain surgery to remove two Arterio Venous Malformations from the right frontal lobe. This is the fifth of seven posts on this blog that is written in the form of a letter to my son Alex. I pray they encourage you. If you are reading this blog for the first time, I recommend that you start on the first posting of the series so that you can enjoy the story from the beginning. This blog series is being written for four reasons:
1. To strengthen the faith of my young son Alexander on the day that he is able to read this blog for himself. We serve a God who does great things.
2. To encourage parents who may go through the same type of struggle that Joanne and I did.
3. To give due thanks for the nurses, doctors, and surgeons that took amazing care of our little Alex.
4. To give glory, honor and thanks to the Lord who brought our son back home to us.
Alexander the Brave One
July 5th
My son Alex,
Your angiogram was scheduled for 10am. I remember the feeling of optimism as we rolled your bed down to the room where you would be assessed. You looked healthy enough to be discharged from the Hospital, we just needed to confirm that all of the AVM had been removed. You expressed frustration in tears as the doctors prepared to give you medicine that put you under. Mommy and daddy prayed as you left our presence, asking God for a good report.
The angiogram didn't take long at all. Mommy and daddy were by your side after thirty minutes. You were still asleep as we awaited the arrival of Dr. Baird to give us the report on the angiogram. She had her poker face on again as she walked into the room. I readied my heart to hear what she had to say, whether good or bad. "How are you two holding up?" Dr. Baird asked. "As well as we can" your mother and I responded back. "Well, I have some good news and some bad news." Dr. Baird spoke softly and began with the bad news, "We found a small growth remaining in Alex's right frontal lobe." She stepped in to the good news, "There is only %5 remaining and it is operable. I feel the best course of action would be to go back in and remove what is left." My heart sank as Dr. Baird spoke. It felt like we were within a few hours of going home with you happy and healthy, but another surgery meant going through all the same risks again, all the same stresses and anxiety. The feeling of optimism and expectation that we would be leaving OHSU suddenly vanished.
Dr. Baird gave us the option of not going through with the surgery, but the chance of stroke was too high if the AVM was not fully removed. Your mother and I took some time to discuss the option of not doing the surgery, but we were convinced that Dr. Baird knew best and agreed that surgery would be best. We chose to not tell you that you would have to go back in. Instead, we had your brother come out and entertain you since the first opening in the operating room was not until the next morning.
We enjoyed the day as a family reading books, playing games and cuddling up for nap times. We took some walks around your hospital floor and met a counselor on one of our treks. She had heard about your story and how you had to go back in for surgery. She checked on your mother and I before asking how you were. "I just want to go home" you told her. To cheer you up, the the counselor invited you into her office which was filled with toys, games and stuffed animals. The counselor looked at you and said, "Alex, I want you to choose anything you want in here. The sky is the limit, if you want it you can have it." Your look of sadness was quickly replaced with a smile. You looked around and put your finger to your lip. "Hmmm" you said as you looked at all your options. You decided on a green teddy bear and the board game Candyland. You also picked out a Scooby-Doo movie that you had never seen. Daddy looked around the room with you and thought about talking you into selecting the item below.
Steve Urkel
Looked like a collectors item for sure. We walked back to your room after receiving gifts that refilled your joy tank. Thank God for that counselor, she lit up our day.
We watched your newly acquired Scooby-Doo movie and after it was over, your good friends Layla and Stacy showed up. We spent some time in the play room building lego towers as high as possible. After building the towers up, you would push them over. Here is a video of you doing so.
Alex pushing blocks over
We must have done that about ten times. You would say to me, "Build it up again Dad". I was happy to do so since you were entertained. Stacy and Layla left after hanging out in the playroom and it was getting near time for me to get Christian home. I gave you a big long hug before you headed back to your room for a early evening nap. I wouldn't see you again until the next morning before your surgery. It was hard to leave you, but Daddy had to take Christian home since he was not allowed to stay at the Hospital. Before leaving, your brother and I hopped onto the OHSU aerial tram for a fun ride. Here are some pictures and a video of the experience.
Scenic Picture of Mt Hood
Daddy and Christian on the Aerial Tram
I promise that some day you and I will go on that tram together.
Mommy stayed with you over night and I slept in Gresham at Grandma's house with Christian. Your surgery was scheduled for 12pm the next day, so I slept in til about 10am to try and get refreshed. I left your brother at Grandma's and traveled back to the Hospital. Uncle Mitchell and Aunt Jenah had arrived to say hello. They gave Joanne and I hugs and comforted us as best they could.
There was heaviness on your mother and I's heart as we drew closer to the surgery time. The doctors came in to wheel you downstairs to the operating room. We followed by your side as far as we could, walking, once again; passed the pictures of dogs wearing funny hats. We walked with you until we could go no further, to the same point that we were at nearly 3 days ago when you first went in for surgery. Once again we prayed. Once again we stressed. Once again we watched you get wheeled away by the doctors, wondering if you would come out of the surgery alive and functional.
Your mother and I traveled back to the waiting room. Grandma Karen arrived an hour later with Christian in tow. Uncle Mitchell and Aunt Jenah were still there as well. We found out that we could get more aerial tram passes for free. Your brother was excited to take your Grandma and some of the other family on the tram. Your mother and I stayed close by and waited for you to come out of surgery. We went into a small garden area a floor above you for about a half hour and sat down together on a bench. We held hands in silence most of the time. I took a picture of a beautiful red tree that stood out.
Tree in the Garden
There was something about the lighting in that tree and the blue sky above that gave me peace. God shows His presence in our lives tin many different ways. Sometimes through blue skies and beautiful trees. I believe God showed His presence to me through that tree.
Your brother arrived back from the aerial tram and stayed at the hospital until 5pm. The doctors were four hours into your surgery before he had to depart with Grandma Karen. After they left, your Uncle Brandon showed up with your cousin Lily. We went and grabbed a little dinner together and then went to a playground for a game of tag. I remember wishing deeply that you were there. I love to play tag with you. The game was bitter sweet as I chased your niece around with your presence only in my heart. After finishing our game, Uncle Brandon left with Lily and your mother and I went back up to the waiting room. Grandma Sue showed up soon after to be with us. At 7pm, Dr. Gupta came out and let us know that the surgery would still require some time. The doctors had to be very meticulous. We appreciated the time and care they were giving you but each hour that passed became harder than the next.
Finally, after eleven long hours of surgery, Dr. Baird stepped into the waiting room. Your mother and I were reading the Bible with Grandma Sue when she came in. We traveled back into the consultation room to hear the news. "Alex is stable and we are confident that we got everything out". I had to ask, "What took the surgery so long, is Alex okay?". "Alex is fine, the surgery took longer than expected because after removing the remaining %5, we did another angiogram and discovered there was another AVM hiding. We had to go deeper into the motor cortex area than planned in order to get all of the growth out." I became concerned upon hearing these words. "Is Alex going to be able to move okay?". Dr. Baird responded, "We can't say for sure until he wakes up. The surgery went well, but we won't know how well until we assess him." That was the best answer that could be given. Dr. Baird did the best job that she could and everything else was in the hands of God.
We went into your room where you lay unconscious. Your mind and body had endured over 20 hours of surgery within a three day period. We tried to wake you up before going to bed but you were unresponsive to mommy and daddy's nudging. The scar on top of your head was now much larger. I took a picture of it so that you could see the incision for yourself when you are older.
Alex's Incision
Grandma Sue came in and gave us a hug. We said a prayer together before she departed for home. Your Uncle Tom, from my side of the family, also showed up after the surgery. He brought his son David with him who had a brain aneurysm before he was a year old. It was comforting to have Uncle Tom near. He is a man of deep faith and was able to empathize with your mother and I from his child having AVM's.
After Uncle Tom left, your mother and I tried our best to go to sleep. But the unwavering worry of how responsive you would be after waking kept us both up throughout the night. I lay in bed and tried to doze off a number of times. I fell asleep once or twice but didn't get any more than a couple hours of rest. It was one of the longest days of my life followed by one of the longest nights. Much of the time was spent with God in prayerful anguish, asking that you wake up responsive and alert.
What if we made the wrong choice, I wondered to myself. Maybe we never should have gone through with the surgery a second time. My mind sat in a place of worry remained there for the night. With eyes blood shot and mind tired, I waited with your mother by my side in anticipation of your waking.
To be continued September 15, 2014.
Interested in supporting the author of this blog? You can do so by purchasing his book, "The Son Who Chases the Father" at chasethefather.com
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Thank you for reading.
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