The last time I was home I asked my Mom if she would have any interest in writing her and my Dad’s perspective about my surgery. I have always found it fascinating to hear what other’s remember. It’s like adding missing pieces to a puzzle. To my surprise, she sounded eager to do it. The next day she called me and told me she had written four pages front and back. She said she couldn’t stop once she started writing. Here is their story (my mom’s story with added tears and “make sure she knows we love her” from my Dad, the man of few words).
February 16, 2016 Linden’s 4th Birthday
Bill and I had plans to go to Carlos O’ Kelly’s for Linden’s 4th birthday with you, Patrick, and the girls. Instead, I got an email from you, “Would it be OK if we skip tonight? I am going home. I don’t feel well.” Wait, what? These were my thoughts this time and every other time in the last two years and almost four months that you got a ache or pain, runny nose, sore throat, etc. So I went home and told Dad I had a bad feeling that something was wrong. I called you and you said that you were just tired and had a headache that wouldn’t go away. I’m sure you were trying not to worry me, but I knew….I just knew…..So cue the many sleepless nights for the next month to come. The nights are the worst with the quiet to leave you alone with your thoughts. The what if’s, the how can I fix this (which I knew I couldn’t), the crying, and the prayers and pleading with God to make you okay.
February 17, 2016
I got up and went to work with about two hours of sleep. At 8:00 am, my phone rang and it was Nathan. Oh my God, I was terrified to answer it!! He had been at your house and Patrick was going to take you to Mayo. Nathan was going to follow you. I called Dad and he told me to go with Nathan. I just sent my boss an email. I had to get out of there. Nathan picked me up and told me there was a change of plans. We were going to Sartori for an MRI. He told me you were having double vision, right side numbness, and facial drooping. Here we go again, 10/25/2013 all over again! You had been doing so well! So for the next several hours, Patrick, Nathan, Dad, and I waited with you for the MRI results (we already knew what they would be), making small talk, watching Patrick pace, and listening to his phone calls to Mayo for further instructions.
Nathan and Dad went to get food which I ended up taking two bites of---I just couldn’t eat. Then, out of nowhere, you said the unthinkable to us, “I need to know that you guys will be ok if something happens to me.” None of us could respond. The whole time all I could think was, “Sorry, Jamie. I know you want that to happen, but there is no way that I could ever make that promise because I know I would never be okay.”
Shortly after, the results came that we were fearing. Your CavMal was bleeding and you were having another stroke. We all cried and hugged you and you said to me, “Mom, I am never going to be okay until this awful thing is out of my head.” To which I responded, “I know,” knowing you had to have another bleed for surgery even to take place, but also knowing what could happen if the surgery didn’t go well.
I then made a few agonizing calls to my brothers and sisters to fill them in on what was happening. Soon after, Patrick had heard back from Mayo with the advice to send us home and come up to Mayo for an appointment on Friday. Another, Wait? What? Moment. How can she possibly be going home? Why can’t they do something to stop the bleeding? I knew they couldn’t though.
So, we were left with good-byes, hugs, and I love you’s in the parking lot. As Patrick and I hugged, he whispered to me, “I will take care of her.” I had no doubt he would.
February 18, 2016
After another sleepless night and endless praying, I again went to work to try and take my mind off of what was happening. After crying nonstop and people asking, “What's wrong? Go home.” and me not being able to talk about it, I called you and could tell how horrible you were doing. So, I called Patrick and basically pleaded with him to take you to Mayo. Poor Patrick--I know what Dad and I were going through, I can’t even imagine the stress he was under!!
About 30 minutes later, I again got a call from Nathan that you both had left for Mayo. Thank God! At least I knew that you would be under the best doctor’s care. It wouldn’t be until later that I heard of how sick you were and the horrible trip that you were on. Thank God for Patrick and his promise to take care of you. You (we) are so fortunate to have him in our lives!
Dad, me, and Kelli (Patrick’s sister) went to your house that night to take care of the girls and tried to act as normal as we could so we wouldn’t upset them. Jaelyn, Linden, and Myah bought it I think, but not Seeri. She knew...she kept asking what was going on, where you guys went, and if you were okay. I had no idea what to tell them.
At about 8:30 pm, we got a call from Patrick and he told us that they had gotten your nausea under control and you were finally sleeping. That was a huge relief until he told me the bad news. He told us your whole right side was numb, your double vision was back, and that this stroke was worse than your first. My heart sank!
February 19. 2016
After another sleepless night, Dad and I got the girls ready for school, worked out details with Kelli to pick them up from school, and took off for Mayo expecting the worst. After getting lost in Rochester (you know us), Patrick’s brother, Tom, greeted us at the door. He offered to park our car and told us that you were doing much better today. They had given you large doses of steroids to reduce the swelling, the bleeding in your brain had stopped, and your numbness in your right side had gone away. We couldn’t believe it! It felt like a big boulder had been lifted off of my chest! God had answered my prayers!
Two weeks of Limbo
After the decision was made that surgery needed to be done, that Dr. Lanzino didn’t feel comfortable doing it, waiting to hear back from Dr. Spetzler in Arizona (knowing that you only had a three week window before your CavMal would attach itself back to your brainstem), Patrick jumped into action again getting everything coordinated and plans made to get you to Arizona. I got a call from you asking Dad and I, “How would you feel about going to Arizona to be there for the surgery?” My initial reaction, “Who was going to take care of the girls, because we were going to do that? They need us, we need to hold them tight.” But yes, yes we desperately wanted to go!
Trip to Arizona
Leaving in a bad snowstorm, we took off in the ‘Bot’, the name you gave the funny Ford van that took us on our journey. Even though we had some laughs about me not being able to open the door, I have special thoughts whenever I see one driving on the road. I had also broken out in hives all over my body from all the stress, so I lived on Benadryl and Calamine Lotion throughout the entire trip. At least the Benadryl helped me sleep at night. After long days of going through Nebraska, Kansas, and New Mexico we finally arrived in Arizona to this gorgeous condo the Patrick was given through your friends.
The next day brought about another MRI, meeting with Dr. Spetzler, and Nathan’s arrival. At the end of that day, you filled us in on the procedure, what he was going to do, how difficult it was going to be, and how you were sure to have deficits after the surgery. These were words I did not want to hear!
While we were eating that night, we got a call from Chelsea. She was a basket case wishing she could be there with us. She was full of worry. I assured her that you were going to be fine and that you had the best surgeon in the world. There was no way she could have come because she was six and a half months pregnant with Kamrie.
We got back to the condo and watched the heart wrenching Facebook call you placed to the girls. They didn’t want to say goodbye and you and Patrick were crying so hard. All I could think was that you were doing the right thing, how Bill and I’s roles were going to change, and how we would have to help out even more with the girls during your recovery.
I know I am leaving many details out, but I could write forever about all my emotions and all the events that transpired during that two weeks of limbo.
March 4, 2016 Surgery Day
This is a day I will never forget! At the tender age of 34, my daughter was going to have brain surgery. “Oh my God, please dear God guide the surgeon's hands and take care of our precious Jamie.” How were we ever going to get through this day?
Nathan, Dad, Angie, and I drove to Barrow Institute, a place we had gotten comfortable with the last two days in the Phoenix traffic. These people were going about their days, going to work, taking kids to school, and we were going to the hospital for my daughter’s brain surgery!
Once we arrived, the morning was filled with listening to the nurses, anesthesiologists, and surgeons again discuss all the horrible details of what was going to unfold. We all took our turns going to the bathroom when it was really just to get away to cry. We tried to hold it together for you.
We took pictures and you were given something to calm you. You were wheeled away and when the operating doors closed, Patrick lost it! Angie and Nathan went to him to console him. Dad and I stepped away because we would be no comfort to him--we couldn’t even comfort ourselves.
The next 10 hours were agony. We spent the time reading ALL the prayers and posts from your ARMY on Facebook. The outpouring of love, prayers, and support was overwhelming! I truly believe none of us would have ever gotten through this day without Nathan, Angie, and all of the prayers from everyone.
Our daughter-in-law, Ashley, sent cards along with Nathan so we played 5 handed pepper until Patrick couldn’t take it anymore and went back to pacing. After about eight hours or so, we got notified that surgery was complete and that Dr. Spetzler would meet with us.
We all went back to the room and Dr. Spetzler commented, “Lot’s of you here.” He told us that your surgery was difficult because your first stroke was so massive. Your CavMal had literally blown apart, so he had to take it out piece by piece. He said the surgery couldn’t have gone any better, although it was extremely difficult, and that you had done very well. He stopped short of saying that he had gotten it all. He felt he had, but wouldn’t know until the MRI was taken. I was trying to hold it together to hear what he was saying and thank him ever so much for what he had just done, but instead I found myself only able to cry.
People had told me that I was strong for being able to get through this, but that was far from the truth. I was an absolute hot mess!
We headed back to the waiting room and talked to the fellow and the anesthesiologist. We asked them all of the tough questions and were beginning to feel more confident about the success of the surgery. But no one told us it would take two and a half hours to close, so we were worried about what was taking so long.
Recovery
I have sat through 14 surgeries with Dad and several with my parents and every time I would be able to see them about an hour and a half later. Even though they would be out of it, they would be able to talk. This was not the case with you. We couldn’t believe all the tubes and apparatuses you were attached to. We would go in and sit with you, hold your hand for 5-10 minutes, and then go back out again.
There was virtually no big response from you for the next one and a half days we were there. Unless you count the relentless vomiting that continued for days.
March 7, 2016 Flying back to Iowa
Patrick picked us up from the condo so we could go to the hospital to say goodbye. We had gotten the news that we were anxiously waiting and praying for. They had gotten it ALL!! It was music to our ears! Thank God for Dr. Spetzler, Barrow Brain Institute, Your ARMY, and ALL the prayers and support! God is GOOD! Thank you! Thank you! Thank you!
We said goodbye, although I don’t even think you knew we were there. You were still really out of it. Patrick took us back to the airport. Even though it was hard to leave, I knew in my heart that we were all now going to be okay and we had to get back to your precious girls. We left again with Patrick telling me, “I’ll take care of her.” I, again, knew he would.
I have rambled on and on. I left out a lot of details, but some are just to painful to remember. I am still so very thankful that everything happened the way it did, because we have our precious Jamie.
Dad and I love you, Jamie! More than you will ever know!
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