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Prayer request


Sledgehammer

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I've been too busy to see this thread until today. Thanks for your taking the initiative to organize things for this Todd. Was really nice hearing from you when you found out about the required non payment for the sign from Nelson . 

Emily's Easter post is very touching 

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April 16, 2023

Journal Entry by Emily Leinenbach  3 minutes ago

Zach has been off the vent 2 1/2 days! Blood gasses the last 2 mornings have been good/acceptable and so he transitioned to t-piece today. The t-piece is essentially an oxygen delivery through the trach but not mechanical support like the vent is and is less flow than the airvo has been. Each day will be monitoring to make sure he is tolerating this and then getting him off oxygen. As long as he doesn’t show signs of fatigue with his breathing we will work on deflating the cuff and more work with speech to get him used to voicing words (the trach has been in the way of that so although recently he has been able to more clearly “mouth” words there hasn’t been sound). We are hopeful to continue forward progress but remain aware and stand strong to not be discouraged by any potential side steps. 


The next week will be very telling. If his respiratory status continues to strengthen and we officially declare “vent liberated” then we will be looking at the transition to Frazier for inpatient (and more intense) therapy. 


We are so motivated and thankful for these steps and this progress. We are thankful for the support that has helped us get to this point. We are thankful for faith and hope that momentum will continue. 

We continue to pray for complete healing. We pray for definitive vent liberation, passing swallow studies, return of normal speech/communication. We pray for strengthening of core muscles, cough, and movements we have seen.  We pray for return of movement to arms, legs, hands, feet. We pray for thoughtful and smooth transitions in the weeks ahead. 

We pray for physical and mental strength, continued daily progress and assurances. We are thankful for even the smallest of change/progress. We are thankful on any day we don’t have a side step/step back. But we certainly hope and pray for a launch forward in strength and movement. We pray for patience. We pray for safe travel. And we pray that his body keeps up/transitions well with these steps off vent. 


Thank you. 

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On 4/15/2023 at 4:04 PM, Sledgehammer said:

No. It’s been there a long time but I have no idea why. 

Seems like I remember him saying that it was useful for cleaning fish.

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Thanks Todd for doing what you have done and reaching out. Thanks to all who posted Emily updates and keeping us informed.  Prayers for healing and safe travels.

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April 19, 2023

Journal Entry by Emily Leinenbach  5 minutes ago

It has been an eventful 3 days. 
We knew Sunday as we transitioned to t-piece there was the possibility of setbacks. 
Monday’s blood gas was not good enough to continue. Zach was out back on the vent with  cpap settings Monday mid-morning. The cpap settings were the lowest support he ever had on vent (step right before airvo) so we focused on the fact that this setting that we worked for WEEKS to get to was now the recovery (rest) setting. 
Tuesday we went back on t-piece and have now been on about 36 hours. They have decreased the flow through this by half since Tuesday morning. 
They will get another blood gas in the morning and then adjust or move forward from there. 
A major goal for the next few days is to deflate the cuff, build that tolerance, and work more with speech. 
 

The highlight of today was taking Zach’s first trip outside in 4 months. We used our PT time to get Zach into a wheelchair and go outside for about 25 minutes. 😊 

We worked with speech this afternoon but he didn’t have strong enough cough or voicing yet to qualify for the swallow evaluation so we will have to wait for more strength there to move forward. 

Almost every morning as we go through our normal routine we do range of motion. With that (and multiple times through day) Zach will test out what he can move. This morning he had about the same movement as yesterday- with most coming from his core/hips/shoulders. 
 

This afternoon he looked at me with big eyes and I knew he had something to show me. (That’s the best feeling by the way!) 

He was moving his legs with flexion in both knees and ankles- and slight muscle engagement that appears to be in calves and quads- will await final PT verdict on that. About 10 minutes later he did his normal shift of his shoulders and he was able to get a lot better range of movement and he seems to have a lot more strength through elbow and wrist- particularly in his left arm. 
 

It’s amazing to see things come back. There is no doubt it will still take a lot of work to regain strength and function in all these areas but to see the movement- to know that there’s something to work with, to build on- it’s a huge boost- a challenge to rise too. 

We are looking forward to conversations and planning for getting to inpatient rehab and more intense therapy. 

We are so thankful for the support. Multiple staff here mention how we must have really good family/friends to be able to be here for Zach like we are. It’s just hard to explain to them how people have pulled together and pull for us and how that’s the community we are part of. Being so close but yet so far from home and seeing and hearing the differences makes us so grateful for what we have. 
 

We are grateful for the progress today, grateful that Monday’s setback was only minor and still a reminder of how far we have come. We are grateful for the weather today and Zach getting to be out in it. We are grateful for safe travel and for the support around us. 
 

We continue to pray for complete healing. We pray specifically for vent liberation, stronger cough, better voicing, and opportunity to do and then passing the swallow evaluation. We pray for movement in hands and feet, strength gains in areas we have seen movement, continued daily assurances and progress. 
We pray for safe travel and in thanks for our community and the progress we have seen. 
 

Thank you. 

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And outside and sun on his face, had to feel good

Keep plugging away, steadily forward. 

Emily is so instrumental in all Zach is doing and trying to do

Has to be the best form of motivation for him to have her there involved in every step.

One day they will look at other and say "whew, what a ride"!!!

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April 22, 2023

Journal Entry by Emily Leinenbach  28 minutes ago

3 days can bring so much change. 

Zach had been doing very well with t-piece, worked with speech therapy Wednesday and Thursday and even tolerated cuff being down (another layer/step to getting fully off vent) all day Thursday. He had speaking valve on for 30 minutes Thursday which is longest he has ever been able to do (as this makes breathing a bit more difficult). The 30 minute timeframe is a check off he has to make to be able to have opportunity to cap trach.  Preparing to cap Friday another gas was drawn. Again, it wasn’t as good as it needed to be. 
However- it was better than it was Monday and in this run we were on  t-piece the full 82 hours (as opposed to some airvo, some t-piece), plus working with speech, plus lower flow rate on t-piece. So this is still positive. There is still progress being made, gains in endurance. 

It’s a let-down to have to be “forced” to rest back on the vent. It’s hard to mentally accept. But we are still on the climb so we know these things happen. 
 

Tomorrow’s plan is that we will attempt t-piece again and will plan for another 3 day run, get the blood gas and then adjust or move accordingly. 
One of the hardest parts of this journey has been hanging on through the twist and turns. To not get too shook when something slips right through our hands. To keep our eyes on the end game and know this is just part of it. Those experiences have made it hard to really enjoy the progress as there is this lingering feeling each positive step is met with another challenge. It even makes it hard to answer the question “how is Zach doing” as an answer at noon could change by 3 and I know that but it sure it hard to explain in the timeframe a passing question allows. 
Regardless- we learn from this too. Learn to celebrate with cautious optimism, learn to not let a setback erase the joy of progress. 
 

Of of the most consistent things we’ve heard is that he needs a stronger cough to be vent liberated so we continue to pray hard for strength in this.

We are thankful for the progress this week has brought. We are so glad to not feel quite so stuck. The conversations regarding next steps to inpatient therapy bring about a lot of new logistics concerns/conversations but it’s a blessing to be at the point we can consider it. 

We are thankful for all the support- for our friends and family who are working so hard on our behalf to hold Zach’s place in life to return to when his body recovers. We are thankful for family being here and with kids when I can’t be. We are thankful for safe travel. 

And we pray for complete healing. We pray for stronger cough, diaphragm, and vent liberation. We pray for patience, strength, and peace on the harder days. We pray for more movement- especially in hands and feet. We pray for building strength in areas movement has returned. We pray today’s rest leads to a slingshot forward in the next few days. We pray for daily assurances and progress. We pray for physical and mental strength. 

Thank you. 

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It’s been said many times about how strong she is but lately it has really been proof. These last few messages she has been disappointed in set backs from a day or two ago but still looks at the gains from a week or more ago. It’s still positive progress! 

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2 hours ago, 1256pickett said:

It’s been said many times about how strong she is but lately it has really been proof. These last few messages she has been disappointed in set backs from a day or two ago but still looks at the gains from a week or more ago. It’s still positive progress! 

So very true. Prayers for all and for more steps forward.

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Oh Lord give Emily the strength and courage to stand strong through this ordeal! Continue Zach's healing and give him the will to fight this evil disease. In Jesus name we ask this. Be of good cheer for Christ is near.

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Journal

April 26, 2023

Journal Entry by Emily Leinenbach  45 minutes ago

First of all: 
We want to extend a sincere thank you to everyone that planned and worked, contributed to, and prayed for the benefit for Zach and our family. We have been humbled and simultaneously blessed by this experience of Zach’s illness and the support of our community. There truly are not words to express our appreciation for what everyone has done to help Zach feel supported and to “hold his place”, keeping him fighting to get home and to attempt to beat the odds of time to recovery. Thank you. Thank you. Thank you all. 

 

Update from last few days: 

There has been a lot of… inconsistency. After a couple days of back and forth conversation and putting Zach on t-piece during the day and vent at night, they have decide he will now only be “forced” to go back on vent every other night.  steps after will be determined in next couple days. Again- the biggest determinant of his ability to move forward is stronger cough. Please join us in praying for this- a strong, productive cough.
 

He is still working with speech and uses speaking valve when she is in room. He has done well with it (tolerating the extra breathing work that comes from it) but his voice is still very weak and fades after just a couple words. A lot of this is related to the paralysis that was in those muscles too, part is that with the trach in place less air can be forced up to make the sound. It is definitely better than it was this time last week. We just need more to move on to swallow study.  He did get ice chips this week though! 

Therapy continues to try to initiate movement that will then help to “awaken” or stimulate other areas. He was able to sit at side of bed without support 8 minutes on Tuesday. Today he sat up in the wheelchair leaning forward and moving side to side, balancing himself (basically just using seat area-not leaning back into chair) for 15 minutes. We are still waiting for movement in his hands and feet, fingers and toes. 

We are thankful for the progress of the last few days in strength. We continue to pray for complete healing and at this point our priority in prayer is stronger cough and vent liberation. 
We pray to build strength in areas we have seen movement start. We pray for hand and foot movements. We pray for patience. We pray for physical and mental strength, safe travel, daily forward progress, and daily assurances. 
 

Thank you. 

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