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Sledgehammer

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18 minutes ago, Sledgehammer said:

He’s breaking records now 😊

Seems like he has some momentum going now.

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February 18, 2023

Journal Entry by Emily Leinenbach  1 hour ago

Still working! 
82 hours in 😉 

Continuing to wean down… 
Tomorrow we will decrease the pressure again and then Monday move to a different mechanism, essentially off machine for up to a couple hours. 
 

We are so grateful for the progress. We are so grateful for the support. And we are so grateful for safe travel and good weather. 
 

We continue to pray for complete healing. We pray for continued progress in weaning. we pray for strengthening of accessory muscles and reflexes to help success and maintaining independent breathing, normal communication. We pray for healing of facial nerve and movements. We pray for continued improvements and strengthening in movement and in muscles body wide so we can optimize time in therapy and get to full functional recovery.  
 

Thank you! 

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February 19, 2023

Journal Entry by Emily Leinenbach  13 minutes ago

Zach is continuing on Cpap/weaning. 

Waiting to turn down pressure support until tomorrow as he was pretty tired today. 


Holding optimism we will continue the forward momentum and see big hurdles crossed soon. 

We continue to pray for complete healing. We pray for continued success with weaning. We pray for strengthening of accessory muscles, reflexes needed to maintain independent breathing. We pray for protection from secondary problems like infections. We pray for nerve awakening in new areas and continued muscle strengthening in areas that have started to move. We pray for physical and mental strength. We pray that we can optimize rehab and resources. 

And- we pray for all others who are facing challenges and/or loss in this season or any season. We realize many others are facing issues and we pray they may feel the support we have. 


Thank you. 

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February 20, 2023

Journal Entry by Emily Leinenbach  3 minutes ago

Went to a lower pressure support but only for a short time today. Back on the pressure support we were on Saturday/Sunday and will continue to try to make that next step. 

This is still part of the weaning. He was previously on full support from the machine and would just “work” on this pressure support for a few hours per day. We are now over 5 days of pressure support mode. These days have been to reduce dependency on machines support and increase ability to maintain with little help. 

The next steps are to turn off the machine all together. There are some challenges, of course, to this. One good way to describe it is that the breathing right now is like pulling air in through a straw. So it does take a lot more effort- not to mention still waiting on more movement/reflexes in chest wall and back- although that is getting stronger. 

For those that know Zach well- it comes as no surprise that he is creating his own way so to speak. They keep telling us “well this isn’t exactly how it usually goes but he keeps pushing through so we will try to adjust and create a weaning parameter that’s just for him”.

We are grateful for the RT’s and staff we have that have been creative in ways to keep things moving.

Besides the breathing advances- we are seeing flickers of movements in other areas too. Not always immediately reproducible and not always very strong but success at attempted movement is movement and that means something is connecting. It’s all very reassuring. And we just want to continue pushing on. 


We are grateful for your support, prayers, thoughts. 

We continue to pray for complete healing. For strengthening of accessory breathing muscles and reflexes, for stronger cough, for facial nerve regeneration. we pray for continued gains in nerve regeneration and muscle movements in other areas of the body too. We pray that as he gains independence in breathing he gains other strength/movement so that make the most of rehab time and ultimately see full functional return- at sonic speed.


thank you. 

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February 21, 2023

Journal Entry by Emily Leinenbach  5 minutes ago

Hit challenges today. 

The blood gas drawn was abnormal to the point that we had to go back to full vent support again today to let things normalize. Will rest through the night and then start over tomorrow. 

He has still gotten a good work out the past few days and it will help in the long run. 

Started another round IVIG today. 

There are still movements in other areas that seem to be getting a bit stronger. 

We are grateful for the hope in tomorrow. We are thankful for safe travel. 

We continue to pray for complete healing. We pray for progress tomorrow. We pray for strengthening of cough, reflexes and muscle strength gains to support independent breathing/weaning. We pray that there are continued gains in nerve regeneration and strength in other areas of the body. We pray for avoidance of secondary issues like infection. We pray for physical and mental strength. 

Thank you. 

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February 22, 2023

Journal Entry by Emily Leinenbach  25 minutes ago

Started back with CPAP today. 

The clock is on again and will just exercise what we can. 

Today was day 2 on this 3 day round of IVIG. 

We continue to pray for complete healing, building of muscles needed for independent breathing, return of normal communication.  We pray for movement and gains in strength. We pray for physical and mental strength. 

Thank you.

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February 23, 2023

Journal Entry by Emily Leinenbach  27 minutes ago

Day 3 of 3 in this round of IVIG. 
 

Continuing cpap/pressure support. They were able to step that down today after blood gasses came back normal. 
 

There is a little more hesitancy this time around. It’s hard to take the break, the step back and start again. Trying to avoid repeating that just from a morale perspective alone. 

Other movements are still there but slow, still a struggle just to even work against gravity.  But where we are today is better than where we were even 2 weeks ago. 
 

We are thankful for progress, thankful for the good days when we have them, and thankful for faith on the not so good days. 

 

We continue to pray for complete healing. We pray for strengthened cough, accessory muscles, reflexes to support normal breathing and communication. We pray specifically to gain back movement tied to facial nerve. 
We pray for nerve healing and growth that leads to strength and functional use or arms, legs, hands, and feet. We pray this happens soon and we also pray to try to understand God’s timing. We pray for physical and mental strength. 
 

Thank you. 

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February 24, 2023

Journal Entry by Emily Leinenbach  15 minutes ago

Continuing CPAP today. 
Will be planning to repeat blood gas again tomorrow and continue to turn down support again if they look ok. 

We continue to watch closely for any changes and are glad for movement that we do see- even though weak at this point. We are grateful for the opportunities of therapy and recovery those tiny movements now will bring later. 
 

We pray in thanks for our family who support us, friends who are there for us, our kids’ resilience overall, and safe travel. 
 

We pray for Zach’s complete healing. We pray for recovery of facial nerve and strong cough reflex. We pray for continued gains in strength in the areas we have seen movement and for new movement and nerve regeneration to occur daily. We pray for independent breathing and return of normal communication. We pray for physical and mental strength. 
 

Thank you. 

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February 25, 2023

Journal Entry by Emily Leinenbach — 3 hours ago

Still work through breathing “exercises” as we are reminded often by small set backs that we can’t successfully wean until that cough and diaphragm are stronger. 

 

We are thankful for our family and friends, safe travel, and small things that keep make us smile or laugh in the day. 

 

 

We continue to pray for complete healing. We pray for stronger cough, stronger diaphragm, and facial nerve recovery. 

We pray for avoidance of secondary issues like infection/pneumonia. 

We pray that there is daily progress in strength and movement. We pray for physical and mental strength. 

 

 

Thank you. 

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February 26, 2023

Journal Entry by Emily Leinenbach  3 minutes ago

Zach is continuing to do well with CPAP. 
We are still anxiously awaiting and praying for more diaphragm movement/strength and facial movement. 
 

As a person can imagine when you are in a situation like this for a long time there are a lot of “collateral challenges” and risks for secondary problems. We pray for avoiding those issues as much as possible. 

We are extremely grateful for all those helping us, those offering to help us, and all praying for us. 
 

We continue to pray for complete healing. We again pray for diaphragm strength, facial movement, and stronger cough. We pray for nerve recovery and strength in arms and legs as well. We pray for physical and mental strength and for at least one area of progress or reassurance each day. 
 

Thank you. 

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February 27, 2023

Journal Entry by Emily Leinenbach  3 minutes ago

Zach was able to be moved to lower pressure support today. 
Continuing to work. 

We are so thankful for support, for our family filling in, and for any small victories of the day. 

We continue to pray for complete healing. We pray specifically for diaphragm strength, cough, and facial movement. 
We pray for continued gains in arms, legs, and body strength. 
We pray for independent breathing, normal communication, and avoidance of any secondary issues/infections. We pray for physical and mental strength and safe travel. 
 

Thank you. 

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February 28, 2023

Journal Entry by Emily Leinenbach  1 hour ago

Overall had a good day- continuing to titrate down on pressure support, still using a rest mode for a few hours here and there. 
Movements we have seen previously do seem stronger/more pronounced as the days go by.

 

We are thankful for gains/progress, safe travel, and support of family/friends- especially those taking care of the farm tonight. 
 

We continue to pray for complete healing. We pray for diaphragm strength, cough, recovery of facial nerve/strength/movement. We pray for independent breathing and return of normal communication. We pray for movement and strength in legs and arms as well so we can optimize rehab time. We pray for physical and mental strength and avoidance of secondary issues/infection. 
 

Thank you. 

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March 1, 2023

Journal Entry by Emily Leinenbach  52 minutes ago

12 weeks today. 

Still working on breathing and gaining strength. 
 

We are thankful for gains, thankful for safe travel, thankful for support, thankful for prayers. 
 

We continue to pray for Zach’s complete healing. We pray for strong cough, facial movement, independent breathing and avoidance of secondary issues/infections. 
We pray for continued strength built in arms, legs, and core muscles. We pray for return of functional/independent movement soon. We pray for mental strength and safe travel as well. 

Thank you. 

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