Max walked to the end of the long hall and back today – twice!
Max and I watched Elder Holland’s conference talk, Lord, I Believe. We heard a baby crying, and I told Max about the 18-month old baby girl Emery in the adjacent room who was burned on 100% of her body. She has been here for over 3 months and most of her right hand is gone. Max started to cry and said, “Dad, can we stop this video so we can pray for her.” He plead for Heavenly Father to help that sweet baby.
It is so like Max to “turn on a light switch in the other’s room when his own is for now so dark.”
1) Max sleeping peacefully for a few hours now, dozed right through his shot, and up for his first night of sleep protocol(the closest thing to real sleep in the hospital:)).
2) Watching Max fold his arms for every prayer.
3) Reading posters from school friends & being in so much gratitude for all the love & prayers.
4) Christ is truly our captain and championing Max through this whole process. From the first nights when I couldn’t sleep I held this little stone in my hand to remind me of my mantra: I trust. I believe, help thou mine unbelief. It’s still serving me well. “…If ye will turn to the Lord with full purpose of heart, and put your TRUST in Him, and serve him with all diligence of mind…He will, according to his own will and pleasure, deliver you out of bondage.” He’s delivering us out of bondage and bandages… (I love this thought Ashlee Miller) one day at a time.
Please pray for: support through his last tough dressing change on Monday, swallowing and exit body functions to return completely, strength for physical therapy, and deliverance home to heal.
Today was another tough dressing change. This 2 hour process involves: pulling the gauze off of the skin grafts (a very painful process because they often stick together), washing (it gets pretty chilly for Max), cleaning the wounds, pulling out staples, then rewrapping. Today they pulled out over 80 staples.
I remembered the talk by Elder Holland on Angels. Here were the parts that sustained me through Max’s horrific dressing change:
- Take heart, be filled with faith, and remember the Lord has said He would fight our battles and our children’s battles.
- The Lord’s promise: I will go before your face. I will be on your right hand and on your left, … my Spirit shall be in your [heart], and mine angels round about you, to bear you up.
- I testify that angels are still sent to help us, even as they were sent to help Adam and Eve, to help the prophets, and indeed to help the Savior of the world Himself.
I just asked Max to say our family prayer tonight. On a day that may have been the toughest of his life, here’s what he said, “Dear Heavenly Father, Thank you so much for this wonderful day. I thank Thee for the great time I got to spend with my family today. I thank Thee for all of my friends and all the wonderful people who are taking care of me while I’m sick. I thank Thee for all of the angels, in the name of Jesus Christ, Amen.”
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