Another day of miracles:
Max stood today for just a moment!
Max reveled in every bite of broth or juice he could muster.
So grateful, getting further from the effects of the meds and Max is sleeping peacefully.
When we asked Max what he was thinking about this morning, he said, “I’m reflecting on my actions.” Andy felt impressed to allow him to feel it. Max felt the consequences of his actions. Then, my mother heart took another occasion to tell him, “God doesn’t make mistakes. Although this looks like “an accident” or “a mistake”, this truly is part of God’s divine design. All things come together for good. This experience, thou painful now, will be one of the greatest blessings of your life and make you more of who you are to be. This experience is the perfect one for you.” His brilliant soul feels already accepting of it and sleeping peacefully in that acceptance.
Thank you Quinn Curtis for reminding me: “Your life mission is your path to personal fulfillment. It was arranged in the life before based on the things you wanted to learn & contribute. It is written in your soul.” M. Catherine Thomas
Today I’m learning to lean into my life mission & all that’s written in my soul and stop resisting it because of my fear of the unknown or possible pain. Thanks Max for showing me how.
Thank you for your continued prayers!!! for all of our strength
regaining every last function: walking, voice, and swallowing
Skin continuing to heal
home on the perfect timeline & solace to the many others in need around the world.
Max had a meal of Jello, broth, and fruit juice today! He said it was the best meal he’s ever eaten.
He also got out of bed and stood up today!
We celebrate every single miracle.
Today was Max’s first dressing change while being conscious. It was rough. I was standing by his side and I said, “Mom is coming to be with you too.” He immediately said, “Don’t let her in. I don’t want her to see me like this.” I was blown away that in the most excruciating pain, he thinks of the feelings of his mother first. I hope I can grow up and be like my son.
We rejoice that Max is resting for the first time in 48 hours.
We celebrate the forward progress that he might be eating and walking tomorrow!
My boy is coming back.
What a miracle!
Some of my favorites from today:
Max: How much longer do I have to live?
Andy: You’re going to live a full life, Max!
Max: I thought I was about to die.
But my very favorite thing was when Max understood his situation and was just so happy that he would walk, talk, breathe, play, and even swim again. He kept saying, “I’m whole. I’m whole. I’m whole” I want to remember every day that I’m whole and I want to be as present and grateful as I am today so it will be true.
Each day has a twinge of hard things and pain, but each day has more and more sunshine. The nurse tonight turned Max’s bed so he could see the view from his window. Miracle to watch the sunset together. Tomorrow will be even brighter and although I know there will be hard things, the truth is we are so blessed.
I believe, Max. I believe you’ll make it through another dressing change (and we’ll find everything healing just right). I believe you’ll take your first steps in 2 weeks tomorrow. I believe you’ll drink and maybe even eat tomorrow. In gratitude for today’s miracles. Praying for tomorrow’s.
Four HUGE miracles today! They took out Max’s
- Breathing Tube
- Bile Catheter
- Central Line
- Arterial Line
He still has a feeding tube and a pic line, but this is a ginormous leap forward in Max’s progress because 1) he is less reliant on machines and meds, 2) he’ll have increased mobility for physical therapy, and 3) they could reduce his sedatives so we could talk to Max for the first time in 12 days!! His raspy voice has never sounded so good! He told his Mom he loves her, and that he’s not in pain.
Driving to the hospital, I realized I had been praying to take as much of Max’s pain as possible. God gave me exactly what I asked for. IVs, shots, and dressing changes were brutal. Nat and I went outside on the lawn after Sunday’s dressing change and literally passed out for an hour.
Today, I had the impression to release the pain for Max – to give it to the Savior, instead of me trying to be the Savior. During the dressing change today, I tried to act as a conduit. If Max was getting staples removed, I said, “I release any pain to the Savior.” If he was trying to sit up, I said, “I release any discomfort or disorientation to the Savior, in behalf of Max.” Yesterday, I would have stored all of the pain in my gut. Today, I found so much more peace, and almost no discomfort as I did this during the entire dressing change and throughout the day. It is a testament to the enabling power of Christ’s atonement. “I can do all things through Christ, which strengtheneth me.”
The next projects we get to co-create with God are:
- Working the sedatives out of Max’s system
- Managing pain
- Rebuilding strength through therapy
Today was a hard day.
As they take down Max’s sedatives, he goes in and out of consciousness, and his discomfort is obvious.
Today he passed the breathing test with flying colors, for which we are grateful.
Tomorrow, they plan to change his dressing again, then take out the breathing tube.
Your prayers are welcome for tomorrow.
We brought all the kids up and went to Sacrament Meeting at Primary Children’s Hospital. Talmage heard the prelude music and said, “This is just like our church!” He saw the stream of kids coming in with their tubes and towers. Some kids came in their red wagons. Talmage asked, “Is this a parade?”
It felt right to worship with so many who are suffering so openly. No one tries to cover up their pain. In like manner, Jesus brings out his broken flesh and blood every week for us to see. If we are willing to bring our pain to the throne of grace, our suffering can be swallowed up in His. I commit to make my chapel more like a hospital than a country club.
We ate lunch with Susan, Harrison, and all the kids. Then they left and Nat and I stayed for Max’s first dressing change since the surgery. It was rough. Two hours of peeling off bloody gauze, cleaning, and redressing. Nat described it afterwards, “I thought he was bleeding from every pore.” Dr Lewis and the nurses are so good at their jobs – Nat and I are eternally grateful.
- Max’s lungs look perfect – he might be able to come off the ventilator tomorrow! We can’t wait to talk to our boy again!
- We can’t see any swelling in his face
- The grafts are taking. Dr. Lewis said they look excellent
- Max has his first post-op dressing behind him 🙂
A few of the miracles we saw today:
Max is off of antibiotics(turned out that positive culture was just common bacteria from his mouth)
Max’s arms are open wide to receive all the blessings that Heaven has to offer (and it will help give him keep full range of motion)
He is breathing like a champ.
Pain medications that help support Max through this most painful time of his healing as his donor skin sites begin to heal and his skin grafts take fully.
John Canaan came and sang these sweet words to Max:
Consider the lilies of the field
How they grow, how they grow
Consider the birds in the sky
How they fly, how the fly
Consider the sweet, tender children
Who must suffer on the earth
The pains of all of them he carried
From the day of his birth
He clothes the lilies of the field
He feeds the lambs in his fold
And he will feed those who trust him
And make their hearts as gold
Lots of love and prayers still flowing to keep us all safe & peaceful.
Angelic help at every turn (my sweet sister Susan, Kathy’s constant presence at every turn, Spencer, Daniel, Lorene, Rachel, Katelyn, Tiffany…)
Max’s surgery went great! Dr. Lewis gave a full report and said his heart and lungs did very well the whole time. They took skin from his thighs to put on his neck, chest, arms, and hands. With the skin grafts in place, Max’s body can now take on the task of recovering and healing!
I weep with gratitude for the miracle of modern medicine. Without it, we would not have our sweet boy with us. Here are just a few of the miracles that have sustained and supported our Miracle Max:
- Trained doctors, nurses, technicians, & surgeons
- World-class facilities (& helicopters) with high standards
- Feeding tube, breathing tube & ventilator
- Monitoring (Heart rate, oxygen saturation, blood pressure, etc.)
- Drugs (for pain management, sedation, infection, etc.)
- Skin grafts
I try to imagine all the people and passion and trials and error it took to culminate in the miracle of modern medicine. I’m so grateful for this country that incentivizes improvements in technology and care. We are so blessed.
Several times today, I broke down in tears as I felt the prayers of all the people (known and unknown) for my sweet boy.
In October of 2011, Natalie was taking the lid off a pan and scalded her hand. She ran it under cold water. It was Max who came to the rescue with natural solutions, which took the pain and redness away almost immediately. While she lay down and rested, Max drew her this picture:
We found a scan of this drawing yesterday. Notice how the living/green side is overtaking the scalded side of the hand. We are so humbled by Max’s wise and caring nature.
Today has been a day of many joys and sorrows. The doctors are confident that the dead skin must be removed and replaced with skin grafts from Max’s other good skin. As a mother, my heart cries out for the perfection to come back to the perfect little boy I bore into this world.
I plead with Heaven to heal the skin on his hands, his neck, and torso. But if not, we will believe still. He will heal still. Oh have mercy, and send us healing and peace.
Max goes in surgery tomorrow at 10 am. We ask for your faith that his surgeon, Dr. Lewis, will be guided.
Thank you in advance. We feel your prayers and your love.