Several in my family have that, including me. My brother is the only one that has had complications from it— he ended up with a blood clot from his ankle to his abdomen, which they were able to dissolve with blood thinners. At one point I remember them talking about “sucking” the clot out with some kind of tool. Hopefully they can do something similar for Josh.Originally Posted by Jakus
Continued prayers for Josh and family
Don’t just sit there – do something short sighted and stupid!
Oh jeez - I just saw this thread. I don't have anything useful to add beyond my fervent hopes for him; really wishing for good news here.
This is a thread where I built a boat I designed and which I very occasionally update with accounts of using it, which is really fun as long as I'm not driving over logs and blowing up the outboard.
https://pistol-forum.com/showthread....ilding-a-skiff
From FB
“ 5/9 8:30AM update - What a rollercoaster these past 24 hours have been. Yesterday started out great! Josh got downsized to a smaller trach, then later in the day got it completely capped off (no air in or out, just breathing all on his own). This is the final step before removal, and he did great! With it capped off he was able to talk some, and we have been told it shouldn’t be long until he gets the trach out completely! 🙌🏻
The whole day was pretty uneventful. He was wide awake most of the day and very figgity and active (especially last night). He’s been tied down this whole time, and usually under sedation or pain meds, so to be so awake and unrestrained I’m sure felt great! He discovered his staples and scar on his head (which I talked to him a lot about, explaining what happened), he kept wiping his face with a washcloth, and enjoyed pulling out his cords a time or two. When I told him he’d better stop he held up his hand as to say “fine!” Lol
Therapy went on as normal yesterday, and I got another hug and an “I love you” while he was strapped into the neuro chair standing up. That’s my favorite part of the day! I also bought him some stress balls my sister found on Amazon that he loves, and he played with those all day. Even tried throwing them to the therapy dog when she came in his room. Haha
Earlier in the day he had made a comment that his forearm hurt. We didn’t think much of it because right now pretty much everything still hurts, but later yesterday evening we discovered that his right arm was red, swollen, and super hot to touch. The Dr ordered a stat ultrasound, and there when we found out Josh has a severe DVT from his armpit to his hand, caused my a midline iv line in his arm. Because of his blood clotting mutation it caused clots to form along the midline and it just expanded, completely occluding his artery in that arm. As you can imagine we were all in shock. This whole journey has been two steps forward one step back pretty much every day, but this felt like many more steps back, and the uncertainty of how to deal with it was very scary.
The doctors decided to not do anything about it over night, and to just leave it alone. The clot is in tact, so the changes of it moving over night were slim, and more of a risk to do something sudden without weighing all of the benefits and risks with all the doctors involved first. Josh is scheduled to get his peg tube today, and they didn’t want to start anti-coagulants before that and cause him to bleed out during surgery, and he really needs this tube placed.
After consulting with all of the doctors they have decided to do his peg tube placement at 4:30 (possibly sooner if they have another opening), and then start anti-coagulation therapy 6 hours later. He will be on a Heparin drip for at least a couple of days until they can safely remove the line without fear of the clots breaking off from it and going to other parts of his body. Then he will be switched to an anti-coagulant oral medication for life. He has been on Lovenox injections for about a week, but clearly he needs something stronger.
Over night his right arm became suddenly much less red, was no longer as swollen, and not hot. It’s like it suddenly went back to normal. The nurses were shocked this morning when they saw it, but the doctors said they’re sure the clot is still there. I’m praying it didn’t break off and go anywhere else, but they said his stats would have drastically changed if that were the case. It would be incredible if God just miraculously made it dissolve, but I guess time will tell! I know that’s not behind His abilities, and I know many were praying for just that!
Please say big big prayers today that this plan is the best plan, and if it not then the doctors will change it. Please pray for his surgery on his belly today, that it goes smoothly. Please pray for his breathing…they will have to change out his trach once again today and put him back on the vent for surgery. Please pray that doesn’t slow down his process of getting his trach out completely (he’s so close!). Please pray this clot will just dissolve and not cause any issues and especially won’t grow and/or break off and cause any further issues. He’s been doing so good and doesn’t need this setback. And please pray for all of our nerves, and these past 16 days have just been a whole whole lot.
God’s got this”
Josh got his trach removed and is being moved out of ICU into a long term care unit for rehab today. He still continues to fight fevers but is making progress and has had some small milestones like eating a little real food and going outside.
Wishing him a speedy and full recovery.
I’ve been in OKC a couple of days now to visit Josh. He did get moved this afternoon to the LTAC and over the last few days several tubes have been able to be removed which is obliviously a sign of progress and has made him significantly more comfortable.
Josh’s wife told me she was brought to tears by the generous gift that Bratch organized with the Uber Eats gift card. It was exactly what they needed. There have had several local friends organizing meals for their fridge and freezer, but the flexibility that the Uber Eats provides really helped fill a need for them as Josh and his wife and their 3 teenage girls have all been in different place for the last 2+ weeks.
It has been both good and tough to see my friend this week, and while his energy level isn’t quite up to talking more than is required of him, getting a few thumbs up and being able to do a few tasks for them easily makes the trip worthwhile.
Next steps for Josh will be to transition to a rehab facility, but he must be able to handle 3 hours a therapy a day to move out of LTAC.
I’ll be here a couple more days, and I hope to be back this way in a couple of weeks.
Thank you all for your thoughts, gifts, and prayers.
God bless you! You are a good friend.
Adding nothing to the conversation since 2015....
It was good to get to see Josh and his family for an extend time last week. He continues to improve and there it looks like he will be moved to the rehab facility in the next several days.
Before I left Josh cracked a pretty good, but dark joke that really let me know he’s still there.
He still tires from therapy fairly quickly, but there is hope that with hard work he will be able to regain much if not all of his normal functions.
I will be back to see him during the week of Memorial Day, and my friends that are local keep visiting and saying they see small improvements between their frequent visits.
Thank you all again for you thoughts. I’ll continue to update this thread when I can.
Just noticed this also. Best wishes and thoughts to get well.
Cloud Yeller of the Boomer Age
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