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Sledgehammer

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April 7, 2023

Journal Entry by Emily Leinenbach  7 hours ago

We have been continuing to work with airvo the past few days. I think I’ve said before but every “step” or “checkoff” seems to have at least 5 little sub-steps written into the fine print and they surprise us over and over again. 

As we wean with airvo we now know we have to build time and also decrease flow through that machine before we can move to the next step. 

After a rough Sunday and Monday - we have been back on track and working to lengthen time in each interval then ultimately the past two days do “straight through time”. Today was 10 hours and in the last hour and a half flow was turned down. I am very hopeful we can synchronize those two steps to avoid extra days focused on that alone. 

Different than issues with breathing and weaning- Zach has not felt well the last few days- dizzy, nauseated and that has limited therapy some. But they still work with him and tell me they feel he is stronger in the exercises they can do. 


Progress is progress and I remind myself of that every day, in all ways I can think to so that we can try to stay in the right head space. 

This is hard. Physically hard on Zach. Mentally hard on us all. And not just our family of 5. We are pulling in help from lots of people- specifically my parents and sister who give up time to be at hospital and with our kids several days per week. They are selfless and it’s a backbone of support we need. We are thankful. For them, of course. But also my cousin running our farm, my aunt who sits with Zach, our friends mowing, work help, people treating our kids like their family to bridge the gaps I leave when I’m spread out everywhere, friends helping us with the farm house, it’s just endless- the support. It’s humbling and overwhelming. And it makes feeling upset seem like a really obscure thing. Almost guilt when it’s a down day. We have all of you, all these people pulling for us, so how could we be down? 

But there are days. And this has been a week of them. I suppose a lot of it is going into the Easter weekend- and feeling the stamp of time while we wait it out. 

It’s part of the process. The waiting, the feeling, the wanting and not getting. Sometimes as I walk the steps up or down in the hospital I stumble or my foot catches (those that know me aren’t surprised at my clumsiness) and I think how do I do that? Walk 100 stairs and not trip and walk the next one and I do? 
but I guess that’s like these days and months, some we trip and some we don’t. 

I recently read a great post on Facebook that I will probably do a terrible job paraphrasing but will try anyway- 
it talked about what Jesus went through during his crucifixion. How they tortured him with each part putting him just at the verge of death but stopping short so they could get to the next phase of his torture, made him carry his own cross and then hung him on it. And how he never called them to stop because he knew…  to have a Sunday you first have to have a Friday. 
To feel the pain of a Friday is to get to know the joy of a Sunday… 

So we may be stuck in our longest “Friday” to date but we still look forward to the Sunday. And if I’m being honest I’m still dreading the “tortures” of the surprise sub-steps and backslides but we will continue to take wise advise given and offer them up- bind them to the cross as was told to us earlier. 

It’s emotional, this process. At a baseline I’m fairly level headed but this throws curves I’ve never seen. 
But- also makes think in ways I never have- some things not so great, some thing make connections that I don’t think I would have typically experienced. 

We continue to be grateful for our support, for faith that allows us to see that what we are going through will serve a greater good- even when it doesn’t feel good to know that, and thankful for the safety in our travel. 

We pray for Zach’s complete healing and to understand delays when they happen. We pray for vent liberation, normal communication, facial movement. We pray for continued gain in strength in cough, diaphragm, swallow. 

We pray for building core strength, seeing more movement and strength in arms, legs, hands and feet. 

We pray for physical and mental strength, positive outlooks, continued daily assurances and progress.

Thank you. 
Happy Easter. 

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1 hour ago, hillman said:

How do you respond to that. I can't give it a like or a Thank You or both! its heartbreaking ,

 What an amazing woman!

X2.  Can hardly imagine what it's like.

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2 hours ago, hillman said:

How do you respond to that. I can't give it a like or a Thank You or both! its heartbreaking ,

 What an amazing woman!

Concur, you will not be placed with a bigger burden than you can bear, Emily and Zach are giants and example to us all, and she has the presence to digest all of it whilst in the middle of it all

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2 hours ago, sandhiller said:

Their strength and faith is so humbling.

I cannot find words worthy in response to Emilie's posts.

I agree. Emily is a special woman indeed to deal with this and keep so much grace in her mood and  writing. I’m sure it hurts more than I can imagine or understand. I guess her strength shows me what faith in what you cannot see should look like. 
 

 

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I have been approached by several people asking if they could help in any way that I knew of. A few of us have gotten together and plan to do a couple things for the family. This is not associated with Red Power but is being done by members on their own. If anyone has a desire to help send me a PM and I can fill you in. 

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April 13, 2023

Journal Entry by Emily Leinenbach  16 minutes ago

We are continuing to work off vent. We’ve crossed a few thresholds the last few days. 

Yesterday through early morning Zach was off vent and on airvo for 16 hours. He then wa put back on vent to “rest”. This morning he started back on airvo and will go up to 20 hours today. They will make him go back on vent to rest for a few hours then will be attempting a full 24 hours off vent. If he feels good with the duration of time they will also be decrease the amount of air that flows through airvo. This has been cut almost in half the last 2 days and he has felt fine, a good sign. As the flow comes down he will switch to something called t-piece. Days following that will be monitoring to make sure he is ok “off” and then vent can be removed from room. If all flows, this would happen in the next week but we try not to get shook by any minor setbacks. These muscles just woke back up and started working in the last 8 weeks so we know we have to be gentle with expectations for endurance. 

Zach has still been working with therapy and his strength is still progressing. He is able to lift his head and move side to side from a semi-reclined position. His arms are showing a little more movement. Nothing happens instantaneously but we know the small increases are what lead to more functional progress. 


We are very thankful for the gains we are seeing, the progress he is making. We are grateful for the support and for safe travel. 

We continue to pray for complete healing. We pray for his strength and endurance to build during these next steps of weaning and for vent liberation. 
We continue to pray for more facial movement, stronger cough, core strength. We pray for strength to build in arms and legs and for movement in hands and feet. 


We pray for continuation of positive outlooks, continued daily progress and assurances, patience, and physical and mental strength. 


Thank you. 

 

 

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April 13, 2023

Journal Entry by Emily Leinenbach  16 minutes ago

We are continuing to work off vent. We’ve crossed a few thresholds the last few days. 

Yesterday through early morning Zach was off vent and on airvo for 16 hours. He then wa put back on vent to “rest”. This morning he started back on airvo and will go up to 20 hours today. They will make him go back on vent to rest for a few hours then will be attempting a full 24 hours off vent. If he feels good with the duration of time they will also be decrease the amount of air that flows through airvo. This has been cut almost in half the last 2 days and he has felt fine, a good sign. As the flow comes down he will switch to something called t-piece. Days following that will be monitoring to make sure he is ok “off” and then vent can be removed from room. If all flows, this would happen in the next week but we try not to get shook by any minor setbacks. These muscles just woke back up and started working in the last 8 weeks so we know we have to be gentle with expectations for endurance. 

Zach has still been working with therapy and his strength is still progressing. He is able to lift his head and move side to side from a semi-reclined position. His arms are showing a little more movement. Nothing happens instantaneously but we know the small increases are what lead to more functional progress. 


We are very thankful for the gains we are seeing, the progress he is making. We are grateful for the support and for safe travel. 

We continue to pray for complete healing. We pray for his strength and endurance to build during these next steps of weaning and for vent liberation. 
We continue to pray for more facial movement, stronger cough, core strength. We pray for strength to build in arms and legs and for movement in hands and feet. 


We pray for continuation of positive outlooks, continued daily progress and assurances, patience, and physical and mental strength. 


Thank you. 

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This sounds like good progress to me. I sent Emily a message a few days ago. She showed it to Zach. Just a positive message about how the RP guys were thinking of him.  He can respond by looking at a board and spelling things out. He spelled out “I wear size 1066” jokingly. It’s amazing he has his good natured spirit while unable to communicate like the rest of us right now. The positive attitude will take him far (in my opinion) 

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On another note. Of the people here that asked and some others who had already wanted to give I checked on a neon sign for Zach. I had asked Emily what might perk him up and he spelled out “I wear size 1066”. I called https://ihgear.com/?socioh_tid=adwords:16883443833:134250990374:592817719435:ih gear&gclid=EAIaIQobChMI3Ojvlo2s_gIVwfvjBx0vWQGdEAAYASAAEgI4D_D_BwE

I spoke to Nelson the owner and asked what his thoughts were. I was eyeballing the neon IH sign. He never tried to make a sale, only said I should make sure it was allowed in the room first. I checked with Emily and she said they were pretty lax about what was allowed so I decided to proceed. I called Nelson back 2 days later and told him we could make it work. He asked where it was going. I told him. He would not let me pay him. I insisted I pay for it. He said NO. I thanked him for his kindness and told him I would tell people about his selfless giving. This is a guy who has never met or even heard of Zach. I was blown away. Certainly a “God Thing”. Nelson said “they can use that money for better things”. Well, that’s what is going to happen. It is more monetary help that will go to Zach and his family. He shipped it on Wednesday and told me it would be there by Friday. I told Emily what was coming and asked to keep it a secret from Zach. 

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Today I get this 

“he was really excited - kept mouthing “that’s nice. wow” 
 

Emily asked that I pass on their thanks to everyone. I told her it was from his Red Power friends. 

2EC5D0A6-D7B0-4420-B2FE-BCCF03AF382A.jpeg

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Huge thx to Nelson and a sign of the Godness still present in this world, and you Todd for organizing this, I'm sure this provided Zach with a pleasant distraction 

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4 hours ago, Sledgehammer said:

Today I get this 

“he was really excited - kept mouthing “that’s nice. wow” 
 

Emily asked that I pass on their thanks to everyone. I told her it was from his Red Power friends. 

2EC5D0A6-D7B0-4420-B2FE-BCCF03AF382A.jpeg

That’s awesome, another thanks to @Sledgehammer for reaching out to ihgear. I’m going to check them out.

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2 minutes ago, rrr4quality said:

That’s awesome, another thanks to @Sledgehammer for reaching out to ihgear. I’m going to check them out.

Thanks. Nelson is passionate about IH. He takes pride in good quality merchandise. I have purchased shirts/hats in the past from him.  Pretty good selection on his website.
 

This is one of his IH vehicles complete with IH rifle.  I told him when he wouldn’t take payment that I intended to let people know of his kind deed so I’m not playing salesman but keeping my promise.  C921324C-7982-4F25-8648-5A70A9498D34.thumb.jpeg.62323801b8bab96e9c74e3a0f133bba1.jpeg3236D5E4-A5A6-4E0E-9FBF-66C77F808D8D.thumb.jpeg.7ef32291a90df570fcba4d841cc9aee7.jpeg51CD72BB-3AC0-4C4B-AC74-ED8C551C1256.thumb.jpeg.2e04bd206dae63f43a8cdb9cfcb6f302.jpeg40F8E370-08C5-415F-A9B8-ECAF9A8EFF8E.thumb.jpeg.2e16c76353560ba2556e0dbc2aa1d1be.jpegADAFBCE5-0BBF-4CE2-B5A3-C092E0377BA8.thumb.jpeg.662724df386ee4565492d05574a77860.jpeg

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