My Industrial Cabin Build

[dirttoys]

After speaking to Dr’s at Cleveland, there is only one procedure that they recommend. Jejunostomy. A feeding tube into her small intestine. They are trying to schedule it as soon as possible. We have referral to UVA as well as a specialist in Richmond. We have an appointment with the Dr in Richmond, next week to verify that this is the proper procedure. Basically a sanity check.

We painted Lauren’s s room last night and moved all her belongings out of her apartment today. Gave a lot of stuff to her roommate. Basically all living room and dining room furniture. Everything we brought back fit in a 10 foot Uhaul.

Thanks for taking the time to update. Had a programmer whos' wife had ehlers, was not vascular and the main issue for her was jaw fatigue/function. He had challenges with keeping the doctors from assigning everything to ehlers virus, bad infection, ect. Got to have the doc's on your side, sound like you are doing the work.

I hope she loves the room (bet she will) enjoy your time with her, thanks for the great build notes, and just hanging in there, I enjoy reading your stuff.

I am a pretty average builder, so I don't offer much, but, if there is every anything I can do, I would be happy to help.

Best,

ed

 

[GLyford]

I used a couple of rough pine 2x8's across my 3-season porch, and along the inside ridge. They had a nice silver-gray to them when I picked them up.

I found a quick hit with a random orbit with 120 grit took the fuzz off leaving the saw marks. Also sanded a small bevel down the corners. This made them a lot nicer to handle and meant they didn't grab brush bristles, but didn't really change the look much at all. I then used "wipe on poly" to seal them, but found out that dissolves the silver-gray. Not much I could do about it once the poly was applied, so just ran with it.

As they have aged, some of the gray has come back. Very happy with the result.

Wife has a fondness for twinkle lights, so had the electrician put an outlet at one end of both beams, controlled by a wall switch.

 

[WoodChuckDad]

Thanks for taking the time to update. Had a programmer whos' wife had ehlers, was not vascular and the main issue for her was jaw fatigue/function. He had challenges with keeping the doctors from assigning everything to ehlers virus, bad infection, ect. Got to have the doc's on your side, sound like you are doing the work.

I hope she loves the room (bet she will) enjoy your time with her, thanks for the great build notes, and just hanging in there, I enjoy reading your stuff.

I am a pretty average builder, so I don't offer much, but, if there is every anything I can do, I would be happy to help.

Best,

ed

So far as we know, hers is not vascular but the reality is that it is a 2 year wait for genetic testing. They base diagnosis on the flexibility tests and symptoms. But without the genetics test you dont know what you have. Oddly enough, she needed to have an ENT appointment and her dr had just recently been diagnosed with vascular. He was 41. Was about to retire, because it is usually fatal in mid 40’s. Life
Can be cruel.

 

[747driver]

Thanks for keeping us updated David ! You and Jeffana have a overflowing plate of issues that must be somewhat draining your thought process ! But you all are handling it with great deal of family first !!

 

[WoodChuckDad]

So.. the last two weekends have been kind of a bust. Last weekend I worked on the mini split for the main room. The recommendation in the manual was to run 6guage to the disconnect. I made a 6guage whip and there is no 6g terminal that fits into the tiny terminal block in the outside unit. I tried to modify the ones I found but the strain from 6 g wire bent them and the were obviously going to fail. I texted my electrician-who called me and said he would use 10 g and probably would have run 8 at most to the disconnect.

I tried to find 8 g terminals that would fit the block and couldnt so I used 10 g and fastened the wire directly under the screw plate. There isnt a proper lug on it and an offset lug terminal is too big. Saturday we moved Laurens stuff out of the apartment in Harrisonburg and into the house. Sunday I worked on the AC some more, i have the inside units hung and the line-sets run. But I need to cut the line-set electrical and re-terminate them. Just too much excess. And I didn’t have enough electrical terminals to do it. Jefanna was organizing all of Lauren’s things. I’ll be back out there tonight working inside.

 

[tradosaurus]

I appreciate the prayers. I'll take every bit of good will I can get. She's been a trooper, but it's really wearing her down. weight was down to 103 last week. 5'10" She managed to put 2 lbs back on so some of that could have been dehydration. she basicly lives on toast avacado, barley and white beans.small meals spaced out. she has a timer that goes off on her phone and it's time to eat...takes half hour to hour.....then sit on the couch with a puke bucket trying to hold it down.
she reads, watched youtube and tick tok videos and draws/ paints. and sleeps a lot

Prayers for a speedy recovery for your daughter.
If she has been vaccinated with the C19 shot I wouldn't rule that out as a culprit. I don't know what the doctors could do anyway.
I would investigate the use of Ivermectin as a long shot.

 

[WoodChuckDad]

Prayers for a speedy recovery for your daughter.
If she has been vaccinated with the C19 shot I wouldn't rule that out as a culprit. I don't know what the doctors could do anyway.
I would investigate the use of Ivermectin as a long shot.

That is possible but she has so many others co-morbidities discovered in the last few years that it would only be a minor influence.
POTs diagnosed a few years ago.
Heart condition diagnosed a few years ago.
Rocky Mountain spotted fever one year ago, intestinal issues that go back a dozen years
Ehlers Danlos diagnosed this year
Endocrine issues diagnosed this year
Dramatic stomach issues diagnosed as alpha-gal (meat/mammal) allergy
All coming together as her stomach has completely failed. She is on a liquid diet and vomits most of everything she eats. It will sit in her stomach for hours sometimes. And the. It comes up. We are hoping for surgery soon. She is down under 100 lbs now.

 

[deezler]

Miserable. So sorry to hear that. Sending positive energy her way, and good luck to you all.

 

[EddieWalker]

I'm very sorry that your daughter is dealing with so much. She is in my prayers.

 

[WoodChuckDad]

Lauren has been a trooper. She has her ups and downs and there have been frustrated tears but overall she has remained upbeat. We keep pushing. She has found a small handful of very good Dr’s but we have had to sift thru some outrageous incompetence. With an underweight young woman the default is always eating disorder every doctor wants to run tox screen and pregnancy test no matter that the last dozen tests have all been negative. Yesterday we had nutritionist who had dr’s notes saying grade 3 gastroparesis and it was supposed to be to get formula ordered for after the jejunostomy. She looked at endocrinology notes and started asking questions about eating disorder. Lauren explained why she was there. The woman had mot read the notes and was not prepared. Said she would have to get back to her. In her after meeting notes she wrote that they talked about an eating disorder. I was not at that appointment. She is an adult and often I sit outside but I will be in surgeon consult tomorrow.