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Sledgehammer

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I just got word a little bit ago that Zach is liberated from the ventilator. I believe they removed it from his room. This is big news and a big step in his recovery process. 

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43 minutes ago, Sledgehammer said:

I just got word a little bit ago that Zach is liberated from the ventilator. I believe they removed it from his room. This is big news and a big step in his recovery process. 

Great news.

 

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May 16, 2023

Journal Entry by Emily Leinenbach  6 minutes ago

Very grateful to report the vent left the room today!! 
 

Next step is to tolerate speaking valve for 8 hours. 
There is also plan for another swallow study this week. 
 

We continue to pray for complete healing. We pray for stronger cough and passing the swallow study. 
We pray for continued strength gains in areas we have seen movements. We pray for movement in hands and feet. 
We pray for avoidance of any secondary issues. We pray for guidance and ease in the coming transitions. 
We pray for physical and mental strength. 

We pray in thanks for the progress of the day and connections we have made helping us to feel confident to continue to advocate. We are thankful for the support and prayers. We are grateful for our faith. 
 

Thank You. 

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May 19, 2023

Journal Entry by Emily Leinenbach  1 hour ago

The last few days have been fast moving- which is a welcome change. 

Zach passed the swallow study Thursday and has been enjoying eating- even if it is Hospital food! I’ve been making food this evening to take for the next few days. We are working to boost his protein intake. 

We are grateful for any and all steps that help us get back to some normalcy and hope this will help stimulate forward change. 

The plan is to transition to inpatient rehab for more intense rehab Monday afternoon. This is going to be hard work but it’s exciting to move forward. 

We are praying for a good weekend, avoiding any secondary issues, and continuing to recovery. 

We are so grateful for this progress. 

We do continue to pray hard for stronger cough as the stronger and more natural his cough is, the better the chances we continue forward. We are hoping for stronger voicing and ability to cap trach- and ultimately remove it. 
We pray for continuing strength returns in areas of movement and pray specifically for movement in hands and feet. 
We are praying for smooth transitions and new beginnings in recovery. We recognize what a blessing the opportunity for rehab and recovery is as we navigate the tough reminders in the last few days that this chance is never a guarantee, even when you are fighting with everything you have. 
 

Thank you. 

 

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May 22, 2023

Journal Entry by Emily Leinenbach  11 minutes ago

We’ve made the move to inpatient rehab!

This is one step closer to home and recovery. The goals here are to gain as much function and strength as possible and then will transition home and to outpatient therapy. 
 

Zach will be working with physical, occupational, and speech therapy as well as pulmonary rehab nurses who will help guide us to capping and eventually removing the trach. 
 

He started with capping today and was told he could do up to 30 minutes.  He was still comfortable at the end of that time so we are optimistic for those next steps. 
 

We are so grateful to have this opportunity for therapy, for steps to be free from the tubes and equipment, and I am grateful for Zach’s motivation to improve. 
 

We are grateful for connections we have made along the way, opportunities for new ones, and also for a new beginning in this long journey. 
 

We continue to pray for complete healing. Specifically we pray for continued strength in cough, capping and trach removal, movement in hands and feet. 
We pray for endurance and physical and mental strength as we begin this more intense therapy. We pray for gains in areas we have seen movement. 
We pray for safe travel. 
 

thank you. 

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Great news indeed.  We'll have old Zach back on the forum soon.

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WoooooooHooooooooo! 
 

May 25, 2023

Journal Entry by Emily Leinenbach  a minute ago

The recent move and change in pace has been so good overall. On his first full day they set him up with an electric wheelchair and today got the attachment so that he can maneuver with his chin. 

He has been tolerating capping the trach for even as long as 12 hours a day. This builds strength and also moves us closer to removing the trach all together.  Not only does his breathing but also his cough need to be strong enough to prove he doesn’t need that protected airway. His voicing is so much better with the cap or speaking valve this week compared to last so I take that as a positive sign things are getting stronger in this area. 


With his PT/OT combo session yesterday they stood him up and supported him and he was able to stand/tolerate for 14 minutes. They were hoping for just a couple. 

Overall- the atmosphere/general attitude here is to be as independent as your current situation allows while also working to gain more and more strength and movement. Zach is scheduled in therapy sessions throughout the morning and afternoon. He is tolerating this very well, w PE Oakley consider what a switch this is. He is getting as much therapy here in a day as he was before in a week. We are grateful for the previous therapy team for implementing things to elicit strength building but are so happy to be pushing hard now. 

I can certainly tell he feels better just to be moving, pushing the limits.  There is no question that Zach has the right personality and drive in his corner to help him progress. Unfortunately, he has a severe variant working against him.  We know if we could get hand and feet movement we would see more functional progress but we are just waiting on those areas to wake up. We remain hopeful that as we stimulate in different ways and gain strength we will see those things pick up. 

Being in rehab is so exciting, but also a little anxiety provoking. In some ways the clock is ticking. We know our time here that is not unlimited and what we have at the end of it is what we go home with. And it can’t be ignored that it will be life changing once again. We know Zach will continue to improve and studies show there can be continuing improvement even at 5 years for patients but we certainly continue to hope, pray, and really believe he will see full recovery long before then. We of course have timelines in our head, wanting him back and life to be “normal”.  But there is absolutely a relief in knowing that unlike some other conditions there isn’t a stigma of “what you have at ‘x’ months is what you stay with”. 

We are so thankful for our opportunities. We are thankful for access to therapy, rehab, and adaptive equipment that will allow him to integrate into things more fully. 

We continue to pray for complete healing. We pray specifically for strong cough, tolerating capping runs, and ultimately decanulation (removing trach). We pray for movement through hands and feet. We pray for strength building in areas that are moving. We pray for functional recovery. We pray for physical and mental strength and good sleep. We pray for daily progress and assurances. We pray for safe travel. 

Thank you. 

 

 

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Wow, so good to see the progress Zach is making

It looks like he is blessed to be recovering in teh right places with the right people

Keep going Zach!

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17 minutes ago, vtfireman85 said:

We are so thankful for our opportunities. We are thankful for access to therapy, rehab, and adaptive equipment that will allow him to integrate into things more fully. 

We continue to pray for complete healing. We pray specifically for strong cough, tolerating capping runs, and ultimately decanulation (removing trach). We pray for movement through hands and feet. We pray for strength building in areas that are moving. We pray for functional recovery. We pray for physical and mental strength and good sleep. We pray for daily progress and assurances. We pray for safe travel. 

Amen.

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