I left Ian and Randy at the hospital around 1:30 am after Intubation. I debated trying to squeeze into the hospital recliner bed with Randy. I might fit. But I promised Kaiya I’d be come home to cuddle. After the long and lonely ride home, wondering what more I could add to my prayers to move God to action, I simply asked Him to hold me together and to give Ian His best. A few hours of sleep, the phone rang. Randy called at 6:15 am the next morning. I heard his kind voice gently wake me, “Honey, the nurse came in. They have a heart for Ian.” Kelly Sasaki said it was like the Lord had this present already wrapped up for us and was so excited to give it to us at just the right time. What a great gift.
I cried and buried my face in the bed to cry some more! Ian had a heart waiting for him in the OR! After 3 months of waiting, there was no more trying to compose myself. I wanted to let it all out! I cried so loud, I woke up Kaiya who compassionately put her hand on my back and comforted me until I was good and ready to get up. I tried to get words out so she could know everything was going to be ok…”Ian’s getting a heart!!” My broken heart was relieved, fatigued, and bursting! I couldn’t say “Thank you, Lord!” enough. I couldn’t get there fast enough. I didn’t get there fast enough! Randy had the honor of walking Ian to the OR.
I called Paul to tell him the news and ask for a ride to the hospital. But he couldn’t understand me through all of our blubbering tears. We all had to calm down a bit and I finally said it clear enough…”Can you take me to the hospital?”
I found Lammy in my parent’s bed and fell on her in all my tears, “Ian’s got a heart!” But she already knew! The news went like telephone through the house. Randy to me. Me to Kaiya. Kaiya to Joshy. Joshy to Lammy. (Bop Bop and Nana were out of town on a road trip.)
Then Randy called back, “Don’t tell anyone yet. Ian doesn’t want them to know.” Ian wrote on his communication board, “In the Bible, they did not celebrate until after the battle.” Who is this kid?! The world has been praying desperately, without ceasing, from California, Maryland, Washington, Princeton, Florida, Brazil, Japan, Africa, Singapore, Thailand, and the Holy Land… all been praying for a new heart and he didn’t want us to tell anyone! I rushed to call Paul back to let him know Ian’s desires and the Secret Society had begun!
For 12 hours only a handful of people knew and relished in God’s perfect provision for Ian. It was like that first month of pregnancy when only God the Father knows about that secret creation growing inside that Mommy. Sometimes Secrets are Sweet and held for just the right time for discovery!
My face had a real smile from the inside out! For the first time in many long days and nights, I had an overflowing Hope and Joy! I wanted to dance down the halls while we waited!! And I did! I danced with Michelle, our care partner who had to escort me out while Ian was returning to his room CTICU room. I got a peek when he was being wheeled back from surgery!!
Then, I remember having this sinking feeling for myself and all of us, Oh no! We’re not going to rely on You anymore!
I know, I’m crazy. I thought, We got our way again. We might think You’re a Big Sugar Daddy in the sky, just giving us what we want all the time and not rely on you. I was afraid we’d become complacent again. Not pray without ceasing. Not be joined together across the continents with single minded compassion and attention to the One we knew could hear it. We would become self centered again. We would only think about this temporary world and all the things we want out of it. The Lord would miss out on this daily, incessant reliance on Him. I felt sad for God and scared for me.
I’m complicated and small minded. The Lord knew there would be more to bring me to my knees…
Day 0: Saturday September 17th, is transplant day. Mostly EUPHORIC all day! Tears of Joy were flowing! He was extubated and sitting up on the first day! His first real words were beautiful and faithful!
“People need to come and see for themselves what their prayers can do!” -Ian
Look what happened when we trusted the Lord!
Day 1 post op: My wonderful Dr. Schwingshackle let us know he had lost three patients in 13 hours. He walked us through Ian’s hardest week and held me when I asked through tears for help to make the decision to intubate or do the BiVad. He was heavy from the loss of three of his kids, but was thankful for Ian’s heart. I doubled over in tears. He said in his great Alps accent, “I hope zese are happy tears.” But no, I was weeping for all the families who lost a child. They were my neighbors on the CTICU. It was so real. I had feared losing Ian and Micah since they were 2 and 4 years old, and now more intensely this whole summer. How many nights did I go to Ian’s bed to check if his heart was still beating? The death of a child was fresh on my heart and mind. And I felt so heavy for my doctors who work so hard to save lives when the odds and consequences were so great. And he comes back to work the next day to do it all over again. My doctors are brave.
Our donor’s family is brave too, generous, and kind to share during such great loss. Anyone can love from a place of abundance. It takes great maturity and character to love and to share out of loss. It’s a complicated Joy indeed.
Days 2-4 post op: Standing. Walking. Drinking. Talking. Breathing on his own. Strong heart beating. His legs didn’t hurt anymore. He wasn’t hunched over a bucket anymore.
Then he started his post op immunosuppressant meds. His sedatives and pain meds began to be weaned. He moaned. He even cried from pain. They’ed give him a little more pain med and he went to sleep. He was strange acting and strange sounding but his numbers were stable. Little did I know what was brewing….
Day 5 post op: I was feeling the fatigue and tired for the first time since July! The adrenaline was gone. I was beginning to feel sick. I finally felt safe enough to leave Ian and asked for help. Uncle Davey came to my rescue so I could go home and rest. Ian could take a walk without any IV pole! He was without milrinone for the first time in months. Off of epinephrine, IV nutrition, and fluids. No pole to drag behind him as he walked!! He made it back to bed…
…just in time to have a Grand Mal seizure. A “Tonic Clonic Seizure” the neurologist called it.
The sight of Ian seizing would have dropped me to my knees. Thankfully the Lord spared me of that with Uncle Davey’s help. But I have a good imagination! I was almost home when I got the phone call from the attending Doctor. She said “Ian had a seizure. He’s a little disoriented right now. Can you hear him in the back ground?” I could. He was screaming. Ian doesn’t scream. But he was just then. You know that saying, “You’re only as happy as your saddest child.” Well, I was screaming too. I was screaming on the inside. Dr. Myke continued, “We think it’s PRES but are sending him to get a CT right now. I want you to focus on this word, Reversible.” They were treating him for Posterior Reversible Encephalopathy Syndrome. I had a million questions and emotions and had to pull over on the road.
Posterior: in the back
Encephalopathy: Brain problem
Syndrome: we don’t really know why it happens.
Now he was on anti-seizure meds. He had some of that strange personality from before; little eye contact, no smiles, distant, whiney, demanding, groggy….I think this was the a precursor symptom of his PRES that culminated into the seizure. Is this what we’ve done to him? Even though Dr. Myke told me to focus on the “Reversible” part, I was afraid this wouldn’t change.
The fear of losing his beautiful mind made this Mamma call out to the Lord again. He could hear my unending, never stopping, never giving up, always and forever kind of prayers because He has that kind of “unending, never stopping, never giving up, always and forever” kind of love for me. I’m lost without God’s love. I’m lost without the Creator’s attention. I don’t just have doctors to ask questions to. I have the sovereign Lord to run to.
We’ve read that “unending always and forever…” thought over and over again from our favorite children’s bible by Sally Loyd Jones. It’s the most beautiful bible we’ve ever read. It makes grown men cry, especially if their name is Randy! Every story whispers His name.
Reassurance of the Creator’s love helps me endure the earth shattering hard things in life. They keep me real. They keep me on my knees. I remember driving around before transplant and telling the Lord, “I like it here.” Even though Ian was in constant pain. Even though I rarely saw my other kids. Even though Randy and I were like ships passing in the storm. Even though I hadn’t slept for a couple months. Even though I didn’t get the answers I had hoped for. I didn’t feel better than anyone else. I wasn’t comparing or complaining. I didn’t feel jealous of other families. I didn’t feel entitled to anything. I just felt desperately close to the Lord. I knew there’s no one else who can handle this but Him. I knew I’m allowed to come to Him because Jesus made a way. He died for the sin that separates us. I knew He would receive me because the Jesus I read about in the bible, welcomed the sick, the lame, the broken, the forgotten, the unwanted, the needy and He loved them.
That silly fear I had, Oh no! We’re not going to rely on You anymore! It’s just that, silly. Jesus promised, “In the world YOU WILL HAVE TRIBULATION, but TAKE COURAGE! I have over come the world!” He didn’t warn us about the tribulation to scare us. He warned us of it because it is certain. We are not entitled to peace. We are entitled to certain troubles here. He prepared us for it so that we could find PEACE in the midst of the storm. His words right before this are,
“I have said these things to you, that IN ME, you may have PEACE.” -Jesus from John 16:33
We always have choices for how to respond in the crisis. I hope you choose Him in yours.
May you find this Peace in your hardest days and find Him trustworthy with your most fragile fears,