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Sledgehammer

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January 9, 2023

Journal Entry by Emily Leinenbach  4 minutes ago

Not much to update today. 

There are minimal signs of pneumonia again and we are starting another round of antibiotics in hopes we aggressively stay ahead of it. 

The heart rate changes again kept them from doing spontaneous breathing trial today. 

We continue to sit in this period of waiting and hoping. 

The kids and I had a long talk tonight about not getting “stuck”. Emotions are normal and allowed but we only give them a little time then we move. We may go back to them, but then we have to move again. If we get stuck we just make ourselves work harder later on. We talked about the fact that we have no control over what is going on except to control ourselves and how we respond. Hard lesson for young minds. It’s difficult for them to find a rhythm too… each time I’m home it’s with this overbearing feeling that I’ll soon be leaving again- I pack meals to eat at hospital when I make supper, repack clothes when I do laundry… all signs that the next day I’ll be gone. It’s so hard on them… and that’s painful for me to see. 

But- tomorrow is a new day. A new opportunity to encounter good news. 

Please continue to pray for recovery. Pray for independent breathing, stable vitals, nerve regeneration, movement, and physical and mental strength. 

 

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Prayers again from here. 

Courage, determination, and strength come to mind when reading the journal entries.

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11 hours ago, Alan Dinan said:

Continued prayers for Zach and family 🙏🏻

X2 and prayers for Emily and kids for strength and wisdom during these time. It's got to be very hard on them as I know it's hard on me just to read and think about what they are going thru.   🙏🙏

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January 10, 2023

Journal Entry by Emily Leinenbach  6 minutes ago

News for the day: Zach has some minimal side to side head movement. Jaw movement is stronger and movement is there in various directions. 

We started another round of IVIG today… first dose is finishing now. 

Zach is having a lot more cramping in his legs again. 

We were able to get him up to the side of bed today- hard to explain but we fully assist the movement and support him sitting but it does show he has some core strength there that we can work with this movement. Our first try over a week ago- he tolerated 30 seconds. Today was 5 minutes. 

We are hopeful to be able to try spontaneous breathing trial tomorrow. 

Thank you for continued prayers. 

Please continue to pray for recovery. Please pray for independent breathing, stable vitals, nerve regeneration, gains inmovement, and physical and mental strength. 

Help Zach Stay Connected to Family and Friends

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3 minutes ago, vtfireman85 said:

Dazed and confused 

“high school girls, i keep getting older, they stay the same age”

Well anyway, allright allright allright is appropriate.  Sounds like Zach made some headway today.

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January 11, 2023

Journal Entry by Emily Leinenbach  6 minutes ago

Today was a stable day. As with last round, Zach gets pretty tired with the IVIG. We finished the 2nd of 3 days today. 

His side to side head movement is more pronounced today. Jaw movement continues. There have been a couple times that he takes breaths over the rate set on the vent. Unfortunately the heart rate went down during the spontaneous breathing trial today but not as quickly or severely as before so hopefully that is settling down. 


He sat in the chair again today for over and hour. 

The staff all seem to be genuinely excited with us and celebrate the positive changes we are seeing. 

Thank you for your continued prayers. 

We pray for God to extend healing to Zach. For recovery of reflexes needed to support independent breathing, for muscle movements to support breathing, completely independent breathing, nerve regeneration body wide, functional movement, and physical and mental strength. 

 

 

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1 minute ago, Sledgehammer said:

Sounds like more positive movement!  

Yes it does.

 

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January 12, 2023

Journal Entry by Emily Leinenbach  7 minutes ago

Today was a busy day. 

Zach sat in the chair for an hour and a half.

The heart rate variability seemed to be calmer again today and so I was asking questions to the respiratory therapist about how we could try to stimulate breathing or allow him to “practice” that without risking the vitals change. While we were talking about it the pulmonologist walked in and said “let’s just try”. They turned off the regular full support mode and turned to CPAP therapy and Zach was able to maintain that for 15 minutes.  That’s the best we have seen so far and I was very happy about it. They then turned his rate down on the vent in hopes that it will stimulate him to continue “breathing over” and work out the breathing muscles. 

Head movement and jaw movement continue. He also sat on the side of the bed (again with full support) for 6 minutes. And we finished our last day of IVIG in this round. So, he was tired this afternoon/evening. 

I am hoping he is able to rest well tonight so we can try the breathing trial again tomorrow. 

I was able to make it home this evening in time to see Luke’s basketball game. I am so glad to be with the kids when I am- but it’s always punctuated by Zach not being there. We are learning to deal with it- keeping focused on the fact that he will be again. Also thankfully for technology- as I videoed most of the game to play back to Zach tomorrow evening when back in Louisville. 

The kids prayers are so sweet I have to believe they pull rank. I especially love that they have learned (over the years) to start with what they are thankful for. It is amazing how much more detail and thought they put into that now. 

We thank everyone for their continued prayers too.  

Please pray for return of independent breathing, strengthening of reflexes needed to support breathing, nerve regeneration, organized and functional muscle movement and overall full functional return. Please also pray for physical and mental strength. 

We appreciate it. 

 

 

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Following Zach and Emily on this seemingly impossible journey is very inspirational. 

Each step forward gets Zach closer to complete recovery. 

I will continue to keep both as well as the kids in my prayers. 

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Prayers for continued strength and improvements for Zach , Emily, their family and all the caregivers involved. 🙏 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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January 13, 2023

Journal Entry by Emily Leinenbach  3 minutes ago

Today was a day for mostly rest. 

Zach was pretty worn out from the IVIG. Only 5 minutes on the breathing trial today. 

Fridays are the hardest of the transition days because I’m home Thursday evenings for just a couple hours before kids go to bed and gone right after school Friday. So they (and I) have a hard time letting go during that time. 

We are also dealing with issues with insurance which I suppose is to be expected along a journey like this one but I continue to learn things I never knew even after my years in healthcare. Wish I could say one day I could write a book on how to navigate but I’m certain it would be outdated before it was even written. Things and processes seem to change by the week. 

We are hoping for a restful night and more progress tomorrow. 

Please continue to pray for independent breathing and return of reflexes needed to support that, nerve regeneration and movement, stable vitals, full recovery, and physical and mental health. We pray for all of these things along with praying for God to defy odds through Zach and expedite the expected recovery time. 


Thank you all for your continued prayers.

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January 14, 2023

Journal Entry by Emily Leinenbach  41 minutes ago

Unfortunately, not much rest last night. Hoping for solid periods of sleep tonight. 

I do think I am seeing more front to back head movement (like you would pull chin toward chest). It’s still slight, but more convincing/pronounced than yesterday. 

The breathing trial didn’t go as well today but I do feel there is a lot of variation in the approach of the RT conducting it and how fatigued Zach is when we start it. 

We did get up in the chair today after a lot of pushing on my part to get staff to help me do it. Weekends can have a different feel and pace here (and everywhere). Zach wanted to go back to bed pretty soon after we got up and I’m sure if he could talk I would have been getting an earful but we made it almost 2 hours today. When we got back to bed I told him I was impressed he stayed up 2 hours and that got a very exaggerated eye roll. Anyone that knows him well could imagine what he would have been saying. And that makes me laugh. His spirit is still strong and I’m grateful. 

Gratitude has become like a lifeline for us. To find and recognize small (or big) things we are grateful for helps to offset other overwhelming negative feelings. And in doing that- I realize over and over how even things I said I was thankful for in the past - I was underestimating their value. 

We have been helped and supported in so many ways in our journey so far. I have been contacted about people wanting to help and made aware of support in other ways too. It is humbling to say the least. Sincerely, we appreciate the support and prayers. 

I can’t really explain the feeling of being in a place where you allow help into areas of your life that you never dreamed you would ever have need. To set aside instinct for independence and pride is a challenge I never imagined as I always considered those things positive traits and not things to dial back. So… we are learning as we go. We look forward to recovery for so many reasons and among them- for the ability to pay forward kindnesses we have been blessed with along the way. 

Please continue to pray with/for us. We pray for independent breathing and strengthening of reflexes and muscles needed to support it. We pray for nerve regeneration, stable vitals, and increased muscle movement and function. We pray for rapid and full recovery. We pray for physical and mental strength.  We pray in thanksgiving for our community, the resilience of our kids, and strength of family/friends helping us and being stretched in their lives as well. 


Thank you. 

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January 15, 2023

Journal Entry by Emily Leinenbach  18 minutes ago

Sometimes the hardest part of the day is watching the clock move. 
 

I told Zach today before I left to transition home and watch Luke speak at historical society that I planned to take down the Christmas tree finally. He cried a little. He would probably kill me for putting that out here. 
In a normal year he would not have cared at all if I took it down Christmas Day. But I think hearing me say it (and me not thinking about it beforehand) made the fact that we missed it and he wasn’t home even in time for the tree coming down real. It made the time hit in a different way. 

It is so hard to see the people we care about most upset and not be able to change the circumstances causing it. He loves our kids fiercely and being away from them is a pain I can’t imagine for him. Even when they visit, it isn’t typical interaction.

There are so many affected facets of life when sick/hospitalized. 

thank you for your prayers. Thank you for your kind words that help raise morale when the reality hits hard. 
 

please continue to pray with and for us. Please pray for full and rapid recovery. Please pray for independent breathing, nerve regeneration, and muscle movement. 
Please pray for physical and mental strength. 
 

Thank you. 

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I can't imagine what the family is going through. I can't wait for the breakthrough day that things are really looking up. Is there anything they need? Any chance there is a go fund me or something to help with expenses? Travelling to and from hospital and wear and tear on a vehicle can really add up. We will keep praying here. 

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