Unplugged (mostly)

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

Prayers

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.

Flesh and Blood

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-post

Today’s miracles:

  • 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 🙂

He Carries Us

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…)

Successful Surgery

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.

New Request

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:

Max-Life-and-Health-Will-Win

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.

Miracle Max

Our first day in the hospital, we remembered the story of Max’s birth. We went in for the checkup and the ultrasound showed extremely low amniotic fluid. They admitted us to the hospital, and we got ready to have our baby. When the doctor went to break Natalie’s water, nothing came out. There was no amniotic fluid. But Max came out healthy and strong. We nicknamed him “Miracle Max.” I designed this little business card and website for him:

Screen Shot 2014-07-09 at 6.52.21 PM

Since we came to the hospital last Wednesday, we’ve been saying, “It’s time to do it again, Miracle Max!”

Here are today’s miracles:

  • Decreased fluid in his lungs
  • New skin buds on his chest

Here are the miracles we are attracting:

  • Healthy, independent breathing
  • More healing of his skin

 

Progress

We are so grateful for the progress we see today:

  • Max’s bowels worked for the first time today since the accident!
  • His chemistry was all within range
  • The x-ray of Max’s chest is looking better – his fluids have come down

We thank a loving Father for the incredible staff here, for the gifts of the earth, for modern medicine, and for the power of prayer.

Thank you for all your continued prayers that:

  1. His lungs continue to clear
  2. His skin continues to heal

Fasting and Prayer

Thank you for overwhelming shower of faith and prayers! At 9:00 am today, we felt like we stepped into a column of pure light!

Here are the miracles today:

1. During the changing of the dressing, Dr. L. said that Max’s 3rd degree burns are more like 25%, not the 30% they originally thought.

2. Max’s swelling has come down significantly. He can now open his eyes!

3. The burns require an environment that is moist and antibacterial. Up until last night, we would mist his body once a day with a combination of natural solutions and then they would apply Silvadene creme with silver in it. We were feeling like Max needed more and wasn’t getting enough for the level of healing that he was ready for. We explored options together. We were both frustrated and couldn’t see another way. Natalie said a silent prayer that angels could work with the doctor and the head nurse to inspire them. The head nurse suddenly blurted out, what if we use the Sulfur irrigation method that we use after skin grafts. This method uses tubes with holes to literally irrigate and carry an antibacterial solution to the burns. So last night, they switched from the dressings being a Silvadene cream to this “irrigation” method. First, they put gauze on the burns, then liquid in rubber tubes with holes in them, then medical bandages. They are allowing us to pour our the mixture through the rubber tubes every 4 hours (and we just transitioned to every 2 hours!!) instead of applying natural solutions once per day with the Silvadene!

4. He is breathing better than ever. He is rocking at 60% ventilation support. His target is 40% and clear lungs to say good bye to the ventilator.

5. Overall, Max’s body is stabilizing from the burn. His pH and SATs are good, and he is making progress towards coming off the ventilator. However, his lungs are starting to fill with liquid, which delays his ability to breathe on his own.

Many have asked if Max is conscious. He is being sedated for several reasons
1. He has a tube down his throat
2. He has a feeding tube down his nose
3. He has 6 other tubes going into his body
4. His body is in a lot of pain, and heals better while sedated

If he weren’t sedated, he would try to pull the tubes out. He can still hear everything around him and is somewhat responsive. About 2 times per day, he opens his eyes and we can ask him a couple questions. He’ll respond by shaking or nodding his head or gesturing with his arms. Then he’ll fade back to sleep. Every time we ask him if he’s in pain, he shakes his head that he isn’t. Almost every nurse Max has had has said he’s the best patient they’ve ever had. He even gave a thumbs up once. They love him and feel the brilliance of who he is.

If you’re still up to it, we invite your continued prayers for:
1. Bowels to start moving
2. Lungs to clear up
3. More skin to be healed.

We have a vision of Max whole in every way: body, mind, and spirit. That is who our boy is. Whatever that is to look like now we accept AND we claim every blessing for this amazing young man. There are moments it feels like he may be going through this to help many others who are suffering know a better way.

Miracles

Today we had angelic help from nurses, doctors, gifted massage & energy workers, and very knowledgable dear friends. I have felt a little anxious that there was more we could do all along, but couldn’t quite pinpoint what it was. Then we explored long enough with some incredibly willing & capable physicians to discover a way to literally irrigate Max’s skin with natural solutions 3 times a day and only change dressings once a day. Miracle #?!! i’ve lost track:) Max has been told that he will serve many “missions. Maybe he was “called on his mission 2 days ago and now he gives his all reminding you & I to believe in the miracles that are coming to be today, tomorrow, 1 month, 1 year, & 3 years from now.
– Natalie