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Prayer request


Sledgehammer

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I would like to offer up prayers for continued strength of faith and understanding for Zach and Emily's children 

Determination, endurance and steady improvement for Zach.

Mental and physical strength (and  rest!) for Emily as she helps Zach get better and manage family affairs.

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May 2, 2023

Journal Entry by Emily Leinenbach  28 minutes ago

The last few days have been somewhat difficult. Through a series of plan changes or no plans at all we have had our patience tested. 

Our goal for this ((long)) stop on our journey is vent weaning. And over the last 4 months  the process has been tedious but forward moving- often 2 steps forward, 1.75 steps back. A couple of weeks ago we were making big strides and the team here was confident enough in the momentum they were talking about a rehab transfer the next week. 

But then the blood gas wasn’t good enough to continue on. Zach’s body needed more time to recover and gain endurance to remain off the vent. We made another “run” off and again ABG was not “passing”. then we hit a stall. There was not a consensus on next steps and so all attempts just paused for a few days. Those days are the most frustrating. Feeling like you could do more but being told there will be no attempt.  Reminders of the lack of control we have.
There are a lot of things frustrating about guillian barre and its recovery pattern. I would argue as many frustrating with navigating the system and the personalities surrounding us. We have no control over those inputs- they things they say or do, but have been forced to live and stay positive in spite of it for nearly 5 months. 
The bottom line is though we have also met a lot of good and dedicated people along the way too. And we are still making progress. Zach is on T-piece (off vent but still using trach) and the next blood gas is planned for Thursday evening. And there are a couple possibilities in the plan from there. 

Zach has more strength in his arms and starting working with occupational therapy this week in addition to physical therapy. We have also been doing some work with speaking valve daily. His voice is still weak but it’s nice to hear some faint words. 

He has continued side of bed sitting and balancing. All of this will help us work into easier transfers/ better core strength which will hopefully allow us to access more therapy equipment and to make more progress when we get to inpatient rehab. 

We have to cross the vent weaning hurdle but are thankful for therapy here working  and helping us see and make progress. We are looking forward to more time and intensity in therapy when we are able to transfer to inpatient rehab. 

We have had reminders throughout this journey and particularly in the last week about how important it is to stay present. Not to live in the past or future. And some days call for a level of focus equivalent to looking just inches in front of you and others grant the privilege of looking ahead. In our experience the winning comes from adjusting our “steps” and keeping eyes ahead. 

 

We continue to pray for complete healing. For stronger and more productive cough. We hope for good results from the swallow evaluation this week. We pray for vent liberation. 

We pray for movement in hands, fingers, feet and toes. We pray for continuation of gains in strength in areas we have seen movement. We pray for continued daily assurances and progress, physical and mental strength, and safe travel.

Thank you. 

 

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May 7, 2023

Journal Entry by Emily Leinenbach  6 minutes ago

Thursday’s blood gas was not good enough to continue off vent. Zach was again put back on vent rest/recovery for 8 hours from Thursday night to Friday morning. This used to make sense as it was more obvious he didn’t feel well. Now it is reassuring that he feels better and better despite pushing harder but for those that know him well- we also know that it’s hard on him to be told to “rest/stop pushing” when he doesn’t feel bad.  It’s now more frustrating and harder to accept these rest periods. 

The next 60 hour mark was tonight at 8. This ABG/blood gas was much better than the last but despite this the plan was set to “force rest” at 60 hours and next threshold will be at 72 hours. So at 72 hours (Thursday morning) blood gas will be checked again. 
 

His cough does seem stronger but still not as strong as we would like so we continue to pray for stronger cough. 
 

He didn’t pass but also didn’t fail swallow study on Thursday. He will be working more with speech therapy on trying certain foods along with exercises to strengthen muscles for swallow to ensure this is recovered before he will be allowed to eat normal foods to avoid those possibly going down wrong (aspirating) which would make him a high risk for pneumonia or infections. 
 

He will continue to work with physical and occupational therapy this week. We are still waiting for movements originating in hands/fingers and feet/toes. 
 

The kids were able to visit Zach this weekend and that is always bittersweet. Of course the visits are needed, welcomed, good. But it’s also a reminder of how time continues on. His mouthing of words is so much better so communication is easier although Addi still likes to “play school” and make him spell out the words. Even when I am away from the kids a couple days they seem to have grown by the time I get back to them. I’ve said before and will continue to say - I am not sure I could do what he is doing, go through what he is and keep my sanity. He is accepting this temporary state of circumstances graciously and courageously fighting to heal and strengthen in any area he can. 
 

There is a lot of hard work left to do. 
We are blessed with and grateful for a deep well of tenacity and grit in ourselves and those around us- our close family, our kids, and friends that are family. Sometimes we can fall into a pit of wondering why things happen. But in thinking about where we are now- it brings light and perspective to so many other unfortunate circumstances we have gone through before. Those things refined us and our “circle” of friends to allow us to be surrounded by the people we are now. There is a quote or statistic out there that says you are essentially the culmination of the 5 people you spend the most time with. And although we certainly have more than 5 people helping us out- it’s that interface of people that keep positive energy, reinforcement, support. Had we not gone through what we have before we may not have had the same experiences with the same circumstances. 
I say all that to really get to the point that although this is not something we would ever choose- it’s comforting to know there will be a purpose. Knowing that good will eventually come from this makes the hard work worth it. 

So in that way - we are thankful for the opportunity to grow. We are thankful for the opportunity to gain insight and appreciation. We are thankful to any patience granted to us as we navigate hard lessons and endure the steps back after steps forward. 
We are thankful for all the steps forward. We are thankful for returns in movement, strength, and the improvements in t-piece runs. We are thankful for our family and friends supporting us and thankful for safe travel. 

We continue to pray for complete healing. We pray for stronger cough, swallow, and vent liberation. We pray for movement in hands/fingers, feet/toes. We pray for strength and continued gains in areas we have seen movements start. We pray for continued daily progress and assurances. We pray for physical and mental strength, safe travel, and guidance as we maneuver after blood gasses this week. 
 

thank you. 

 

 

 

I and many others pray for continued improvement, strength and willpower.

And may the Lord bless and comfort you during your long journey. 

 

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9 hours ago, sandhiller said:

I’ve said before and will continue to say - I am not sure I could do what he is doing, go through what he is and keep my sanity.

This line from Emily’s update, she seems like one tough cookie, with all she has been through to this point, I don’t agree with her saying that.  She has had different struggles compared to Zach, but she’s been the rock holding everything together while Zach is fighting this to get better.  I think Emily could whoop most of us!!
Continued prayers for both Zach and Emily from MN!!! 

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5 hours ago, Farmall1066 said:

This line from Emily’s update, she seems like one tough cookie, with all she has been through to this point, I don’t agree with her saying that.  She has had different struggles compared to Zach, but she’s been the rock holding everything together while Zach is fighting this to get better.  I think Emily could whoop most of us!!
Continued prayers for both Zach and Emily from MN!!! 

She is WAY underestimating herself. May God keep blessing her with the strength she needs 

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May 11, 2023

Journal Entry by Emily Leinenbach  33 minutes ago

Zach ”passed” his blood gas this morning. this is great news and further than we have made it up to this point. 
 

The normal protocol is that is a patient maintains pH at 72 hours they are considered vent liberated. 
However, with Zach’s case being different they have decided to leave the vent in the room and redraw gas tomorrow morning (96 hours). 
 

Either way- he hit the goal for today and we will just keep moving on. 
 

He has been able to continue getting some small amounts of food with the speech therapist to strengthen swallow and use for purposes of exercises with this therapist in hopes that he will fully pass his next swallow study- expected to be about a week or so from today.  Today she brought an essential vanilla ice cream and that was well received! 
 

Zach is still working with physical and occupational therapy. His arms are stronger and there is slightly more movement in his wrists. 
we are still waiting for movement in hands and fingers, feet and toes. We would like to see more strength through knees and overall. We are optimistic for opportunities in more intense physical therapy. 

No part of this has been easy. There is a lot of discomfort being so limited in movement, however some movements are also very painful. I’m amazed how well he fights through this. 
Staff here keeps warning him that therapy will be intense and draining. But I still truly believe this will be something he will thrive in. Hard, yes. But I think he will appreciate the opportunity and the work that comes with it. 
 

We are so very thankful for any and all progress. We aren’t sure why yet but we remain thankful to be in this position. We have certainly been blessed by community and support. We don’t like having a reason to be but we are trying to stay patient in this recovery process for the day we understand why we were meant to walk this path. 
 

We continue to pray for complete healing. We pray for increasing strength in cough, for complete vent liberation, for muscle strengthening and return of functional movements. We pray for stronger swallow and passing the next evaluation. We pray for transfer of movement also into wrists/hands and ankles/feet. We pray for physical and mental strength. we pray for daily assurances and progress. We pray for safe travel and understanding staff, collaboration, and forward momentum. 

Thank you. 

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Achieving goals and pushing through pain.

We can all learn from Zach's will to get better.

And a big thank you also to Emily for sharing their journey.

Two very exceptional people!

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That's good news on the blood gas! Such a long process. I think I would go crazy. Wishing Zach continued progress and patience. 

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I haven't posted on this thread until now. But I've been reading it since day one.

Zach is one of the few people here that I've actually spoken to personally, and on the chance this makes it back to him or to Emily, KEEP UP THE GREAT WORK. YOU ARE INSPIRING US ALL!

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May 14, 2023

Journal Entry by Emily Leinenbach  2 hours ago

Very quick update- 

Zach has passed the ABG’s (blood gas) all weekend. We are now over 6 days off vent. He still has the actual trach and there is still a type of oxygen connected but being off vent and keeping good ABG’s means his body is doing all the work of breathing and is able to maintain the depth and rate of breathing to keep the normal balance. We typically do this automatically but after the level of paralysis Zach had those muscles weren’t responding to normal cues. Things going well this far off vent is a good sign those muscles have the endurance to maintain. However- they want one more ABG (to be done Monday morning) before they will take vent out of the room. 
Vent out of room=vent liberated. And hopefully means a transition to  inpatient rehab. 
 

We are very hopeful but also appreciate all prayers. 
We are praying for total vent liberation. Praying hard for physical and mental strength. We pray for stronger cough to help maintain his airway and be able to move toward capping and removing the trach. 
We pray for continued gains in movement and body strength. 
We pray for complete recovery and in thanksgiving for the progress we’ve made and the support, hope, and endurance that has gotten us to this point. 
 

Thank you. 

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4 minutes ago, Sledgehammer said:

Never as much progress as they/we would like but still sounds like good progress. Answered prayers for sure. 

X2 Sure glad to hear that's he's doing better. 

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May 15, 2023

Journal Entry by Emily Leinenbach  22 minutes ago

To follow up yesterday- 

the blood gas this morning was still within range but trending down. So once again the vent stays another day and we repeat in the morning. 
 

There is a lot of frustration in this phase. A lot of feeling like we are fighting against instead of working with the ones we have been forced to trust at this point.  We feel he is stronger than they are giving him credit for but this isn’t the first time Zach has faced this type of thing and we remind him he has done hard things and proven people wrong before. We are working through this phase as tactfully as we can. Many times lack of an update is due to lack of clarity of the plan. 
 

We continue to pray for complete recovery, vent liberation, stronger cough, physical and mental strength. 
 

We appreciate the prayers as we navigate the next few days. 

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