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Sledgehammer

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June 2, 2023

Journal Entry by Emily Leinenbach  8 hours ago

It’s been a busy week. 

Therapy continues and Zach is loving it. I think if he had the option to do more than 4-5 hours a day he would gladly. 
 

This week he started with the arm bike. After we position his legs onto pedals he was also able to do nu-step/seated type bike. They have started e-stim with him which is use of electrodes and electricity to simulate muscle contraction and facilitate movement. This has been used just on his arms so far. We did more side of may standing (with lots of assist), seated balance exercises, core work. 

Today they actually put Zach into a harness to help support his weight and then with a LOT of help- supported him and “walked” his legs.  He did 10 laps which surprised the therapists. To be clear- he couldn’t support his weight and walk yet- but this movement is to help put weight through legs to stimulate recovery and also to stimulate the muscle memory of walking. we have a long way to go but it’s all very exciting. 


He continues to do better and better with voicing and conversation. It’s still fragmented because he has to stop for taking a breath more often than usual but it’s great to have easier and more fluid conversation.  He has been able to communicate in some form throughout our whole course - in the first days with just moving his eyes up and down for no and side to side for yes because the day following intubation he wasn’t even able to blink- the paralysis affected even those muscles. When we got blinking back we started using the alphabet board to spell words. Then with nodding we could use that for basic yes and no’s. It’s was such a relief when we recently got enough facial movement that he could mouth words.  Then when his respiratory status allowed we started the speaking valve but his voice was so so weak. Initially we still relied on the mouthing of words and got the occasional sound along with that. Then his voice became stronger and we were happy to hear words even though they were almost a whisper. From there- he has continued to gain strength and voice quality. When we moved to rehab the new pulmonology team changed the trach to cuffless and that allowed better voicing as well. In the last week he is steadily gaining better voice and stamina in talking for longer conversations and this has allowed Zach and all his sarcasm and personality to shine through to staff and everyone he meets here. We are so blessed that he never needed sedation, could always communicate his needs and wishes in some way. But it is such a relief to For him to not have to work so hard to “say” anything and to finally be able to enjoy conversation. 

The trach has been capped for over 3 days and there is talk of removing it all together possibly next week. 

There has been so much renewal with this transition to rehab and we are grateful. It’s a good validation to see the work paying off.  Any strength we gain is a win. This process has opened my eyes to how complex each functional movement we make is. So as we gain strength in more areas we hope to trigger movement in others. Then we hope those areas strengthen and that the cycle continues until there are enough areas engaging and that they are strong enough to create functional movements. 

We are grateful for the opportunities of therapy and the skill of the team working with us. No inpatient rehab is forever. Most are just a couple weeks. At this time we think Zach will be moving toward home by the end of the month or early July. 

This is so exciting but also anxiety provoking. We have a lot of work to keep doing at home too and will not have staff there to assist. We are learning tips and tricks and he is getting stronger and this will be just another evolving transition on the journey. 


We pray for guidance and wisdom as we transition through next steps and plan for outpatient therapy. 
We pray for Zach’s complete healing.

We specifically pray still for a stronger cough.  We pray for continued forward progress and daily assurances. We pray for strength in all areas showing movement. We pray for movement in forearms/hands/fingers, lower legs/ankles/feet.  We pray for physical and mental strength, safe travel, and for our staff to continue to be innovative. We pray for protection from any secondary issues or setbacks. We pray for functional movements. 

And-  we pray in thanks for all that we have gained on this journey and all movement/returns we have seen to this point. 


Thank you. 

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June 10, 2023

Journal Entry by Emily Leinenbach  13 minutes ago

Another week has flown by! 


Zach is doing great with therapy. He is definitely getting stronger and we are anxiously waiting for that strength to lead to functional movements. 

He does 4-5 hours of therapy a day with combination of occupational (upper body/arms), physical (core/balance/legs), speech therapy (voice quality/volume and endurance), and pulmonary therapist (helping with exercises and strategies to improve diaphragm strength/cough). 

Of course we are anxious to see so many things come back. But for the best safety/ easiest transition to home we hope for stronger cough and diaphragm. The issues caused by his severe diaphragm paralysis are what has kept us in the hospital so long. There are many things for his body to bounce back from- but the more normal his respiratory status is at home, the better we all will feel. 

We are so thankful for the gains since we have transitioned here, the support of family and friends, and hope in the coming weeks. 

We continue to pray for complete healing. Again- specifically we pray for stronger cough and diaphragm. 
We pray for improvement in strength and movement in areas we have seen returns. We pray for movement in hands/fingers, feet, ankles. We pray for physical and mental strength, safe travel, and productive work at therapy in the coming weeks. we pray for continued daily gains and assurances. 


Thank you. 

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June 14, 2023

Journal Entry by Emily Leinenbach  5 minutes ago

Zach started the week out with a bang. 

Both the trach (breathing tube that has been capped) and PEG (feeding tube) were removed yesterday. 

They had told us to expect his voice to be very weak or gone for a few days after the trach removal but thankfully it has been nearly just as loud and clear as before. 

We continue to work with therapy in hopes of improving strength and forge through to functional movement. They are also utilizing e-stim (essentially shocks delivered to muscles to stimulate contraction in hopes this helps stimulate more movement). 

Zach is getting stronger but there is just a lot of strength to gain. Sometimes it is frustrating to see what isn’t back but it is amazing to think of all we have gained. At the worst I would manually close Zach’s eyelids so he could sleep. There was quite literally no outward movement. 3 weeks later we had twitching in his jaw. And now at 6 months- chewing, swallowing, talking, full facial movement and expressions, core strength and balance, hip and shoulder strength and movement, movement in biceps and triceps and into hamstrings and quads.  

In therapy (and with a lot of assistance) Zach is put in a harness of sorts and with therapists in front, behind, and beside him he helps facilitate steps and “walks”. We try to do this daily. He asks for more therapy between sessions. We try to go to the gym on weekends when no therapy is scheduled. His motivation is amazing. Him having a stronger voice has been very freeing too. We are now hearing all the sarcastic comments he couldn’t say the last few months! 

We are working on getting things set up for his transition home. It’s exciting and also daunting but certainly a welcome step on the journey. 

Each phase takes a lot of planning, coordination, and decision making with very limited ability to know what the next weeks and months hold. We just keep trying to do what makes the most sense at the current time. We were given advice early on by another GBS family to make no major decisions for a least a year.  I added to that a commitment to try to keep things as normal as possible for the kids - trying to keep their normal activities on the schedule. It has taken help from a lot of people and we appreciate it. 

Summer is busy in many different ways this year. I’d be lying to say we don’t miss our friends, our normal, our regular routine and rhythm. Most of all we miss seeing our kids every day and tucking them in and letting life be about them. But- we are on our way back. And we are thankful for every day we move in the right direction and all the lessons and insights we learn along the way.  We have days where we feel like a lost has been stolen in this time but we have to focus on the fact there are things to be gained and just take it for what it is. There is some reason or some good to come. Ripple effects… we may never know. 


We are so thankful to be where we are now. We are so grateful for his gains and our overall support. 

We continue to pray for complete healing. We pray for diaphragm strength, strength and movement in lower arms and legs, initiation of movement in hands and feet. We pray for physical and mental strength, safe travel, and continued guidance in our upcoming transitions. 


thank you. 

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  • 2 weeks later...

Just thinking of Zach today as I freely move around the ranch checking cows 

That is what he should be doing.

I believe Todd @Sledgehammer said Emily may be bringing him home soon.

I sure hope so.

For the kids sake at least.

And nothing better for your spirits than being at home.

And eliminating the distance and travel may take some of the load off Emily also. What a gal. 

My prayers for continued improvement.

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June 28, 2023

Journal Entry by Emily Leinenbach  20 minutes ago

Zach is once again a Hoosier! 

We made it home yesterday after being in the hospital over 6 months.

It is good to be home. We still have a long long road ahead of us, but we can’t get to the finish line if we don’t go through all these steps. 

It’s been a challenge to set the house up so it’s easy enough for Zach to utilize things but not permanently change things as we expect him to be back to his normal and to graduate from these aids/devices. 


It’s painful at times to see him using certain things, to not be able to do certain things, and to be reminded how our world is not set up to accommodate this. I have always been a planner but there is a lot more planning for even simple things now than even I can wrap my head around. 

But this is a phase on the road to recovery. As painful as certain things are- we can’t get to the end without these steps. 

We will start outpatient therapy next week and we have plans for implementing exercises and therapy at home. We will be busy in different ways now that we are not traveling back and forth to Louisville so often. 


we are looking forward to the future and glad to be back under the same roof. 

We appreciate all those who have helped us get to this point and who continue to stand with us. We have had that lesson reinforced throughout our journey- there’s such strength and comfort in having people who are with you in the long haul and rough patches- not just the “good”- and we are blessed with some really steadfast people in our life. 

We continue to pray for complete healing. We pray for continued cough strength and avoiding any secondary infections/issues. We pray for gains in physical strength and functional ability. We pray for daily assurances and progress. We pray for physical and mental strength. We pray for the kids as they bea much closer witness to this disease and it’s effects on their dad- their hero, it’s hard for them to understand the unusual paradox this disease is. We pray for good connections and guidance as we lay the foundation for our home game plan. 

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This is the best news, congrats on being back home and the perserverance and sacrifice made by all ♥️

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12 hours ago, Sledgehammer said:

June 28, 2023

Journal Entry by Emily Leinenbach  20 minutes ago

Zach is once again a Hoosier! 

We made it home yesterday after being in the hospital over 6 months.

It is good to be home. We still have a long long road ahead of us, but we can’t get to the finish line if we don’t go through all these steps. 

It’s been a challenge to set the house up so it’s easy enough for Zach to utilize things but not permanently change things as we expect him to be back to his normal and to graduate from these aids/devices. 


It’s painful at times to see him using certain things, to not be able to do certain things, and to be reminded how our world is not set up to accommodate this. I have always been a planner but there is a lot more planning for even simple things now than even I can wrap my head around. 

But this is a phase on the road to recovery. As painful as certain things are- we can’t get to the end without these steps. 

We will start outpatient therapy next week and we have plans for implementing exercises and therapy at home. We will be busy in different ways now that we are not traveling back and forth to Louisville so often. 


we are looking forward to the future and glad to be back under the same roof. 

We appreciate all those who have helped us get to this point and who continue to stand with us. We have had that lesson reinforced throughout our journey- there’s such strength and comfort in having people who are with you in the long haul and rough patches- not just the “good”- and we are blessed with some really steadfast people in our life. 

We continue to pray for complete healing. We pray for continued cough strength and avoiding any secondary infections/issues. We pray for gains in physical strength and functional ability. We pray for daily assurances and progress. We pray for physical and mental strength. We pray for the kids as they bea much closer witness to this disease and it’s effects on their dad- their hero, it’s hard for them to understand the unusual paradox this disease is. We pray for good connections and guidance as we lay the foundation for our home game plan. 

Rock on Zach & family!! Keep at it!!

Mike

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