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Ray Bertrand
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My prayers are with you and your family Ekuth. Hang in there. You have many friends.

Ray
EnterTRAINment at its best. Keeping the Magic Alive in Northern BC
Ekuth
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Well folks, I wish I had more interesting news to relate, but we're in a holding pattern.

She has pneumonia in the right lung; they have her on 3 different antibiotics. She sleeps alot- has been basically out of it for the past several days. Dialysis doesn't help the energy level, it wipes her out. I still spend time with her every day, even if it's just to sit with her. Hopefully, she knows I'm there.

Once the pneumonia is cleared, they can begin weaning again. She's on the CPAP or positive pressure setting, so she is breathing on her own with pressure support- at least we haven't backslid to total machine breathing.

Me... I'm just trying to keep from going bats. I miss her. I miss talking with her, the sound of her voice, her presence in the house. My darn sleep cycle is so messed up right now... I can't fall asleep until 3 or 4 A.M. and then I'm up at 7 A.M. to get the kids to school. Come back, clean, search for work, nap an hour or so and then pick up the kids, visit Kim, come home, fix dinner, get the kids to bed... and spend another sleepless night.

Rinse and repeat ad infinitum, ad nauseum.

There's part of me that just wants to crawl in a dark cave and not come out, but I can't give in to dark thoughts or depression. The kids depend on me, and if for nothing else, I need to keep going for them. But being a single parent (in effect) is much more difficult than I had imagined... so kudos for those of you who do, or have.

Funny how we take for granted the people around us... until they're not there anymore. And it's not just the big things, I find it's more often the little things that I miss most.

Well, regardless... day by day.

Sorry to be a tad downbeat, the shadows have been crowding close in the corners of my mind and it can be tough to shake them off at times. However, I know I'll bounce back in a day or two. Just... gets wearing occasionally.

Thanks again for your support, all.

More when there's something worth reporting on.
"All you need is in Fitzkee."
Zombie Magic
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Brother, thanks for letting us know what's going on with you. Our daily prayers are there for you.
Devious
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I was curious but didn't want to ask. Thanks so much for keeping us informed hermano.
If its even possible, I have even more respect and love for you now Brother. There
are reasons for each event in our lives.

I know it's difficult to comprehend during these tough times, but her battle is something
that brings lessons for all who have been affected by Kim's struggle. There is ALWAYS
a silver lining somewhere. It just takes time for it to reveal iteself.

You have my number and you can say that you have a vacation home in San Diego.
My house is just as good as yours guy!
Devious Deceptions
"Gadol Elohai!"
L'Chaim!
Magician Shaun
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Ekuth,

I am disappointed to hear that things are not better for you and your wife. I am happy to hear that they have not gotten as bad as possible. I hope that things get better and me and my wife continue to read your story and send positive thoughts and energy your way. My wife, Xiaoxiao always asks me after reading your thread if I would be as sweet and wonderful to her if she was sick as YOU are to KIM. I always tell her that I would and I hope it is the truth. You are a strong and great man. Keep fighting the Good Fight!

Shaun & Xiaoxiao!
Eric the Excellent
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Thanks for keeping us updated. I, too, have been wondering but did not wish to pry...

Here's to you, Ekuth. You're made of stern stuff.
Dr_J_Ayala
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Devious makes a good point. Whilst it is on the disappointing side that advancements, as much or as far as we would like them to be, have not been made. However, as other have said in so many words, at least things have not gone downhill and she has not regressed.

All of this can be very hard on a person of course, but your kids appreciate what you are doing for both them and their mom, your wife, whether you know/realize it or not, and whether they show it or say as much or not. Just keeping a routine as you are is enough to give them all the hope in the world, and all the security that they need. It makes them feel safe, loved and cared for, even if it just you for the time being. They know mom is there too, and if not physically then at least in spirit.

You all continue to be in my daily thoughts and prayers.
Ray Bertrand
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Thanks for the update Ekuth. We will continue to pray for you and Kim.

Ray
EnterTRAINment at its best. Keeping the Magic Alive in Northern BC
Ekuth
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To answer all of the concerned PM's (you guys are the best, really) at one fell swoop:

Update:

Sorry I've been absent from posting. Been running myself ragged as usual trying to take care of everything, fighting govt. agencies, et.al.
Plus it's been more or less a static situation with Kim lately, so...

Basically things are day-to-day. BP is good, blood sugars are slightly elevated (which is better than low in her case). Temp has been off and on, she's obviously fighting with the lung. They've pulled all but one or two antibiotics, so at least there's improvement.

Still on CPAP/Pressure support with the ventilator. They are steadily decreasing the volume assist, but her CO2 ratios are still whacked and they haven't been able to figure out why.

They want to put in a PEG tube (upper stomach placement) to get the feed tube out of her nose- while I'm leery of any more surgeries, the nose tubes are meant for short-term only, so I've approved that.

What I *haven't* approved is what they want to do to her middle and fourth fingers of her left hand... amputate.

Admittedly, she does have Steel's Syndrome/Dry Tissue Necrosis (Dry Gangrene) on the tips of these two fingers and it *is* spreading, but very slowly and frankly I'm not in favor of whittling off bits of my wife. This plan of theirs may treat the symptom, but NOT the underlying cause. What happens if they take the fingers and the DTN takes hold on the stumps or the other fingers, smart guys? Just gonna keep on slicing off bits and pieces?

Homey don't play that.

I mean it would be one thing if these were active infection sites, or they were superating (creating pus) but THEY'RE NOT.

And...

Why is it that *I* have to be the one to bring up the option of debriding the necrotic flesh and utilizing a skin graft to save said fingers? Why was this NOT EVEN SUGGESTED as an option?

*beats head repeatedly against wall*

I swear physicians these days are far too interested in cutting to the chase and taking the last resort rather than following common sense and trying to WORK ON THE UNDERLYING CAUSE... gah. If I wasn't here to advocate on her behalf... I shudder to contemplate. I've already saved her from being Foley cathetored four... yes... FOUR times. WHAT DO YOU PEOPLE NOT UNDERSTAND ABOUT "DOES NOT PRODUCE URINE"?@!?!!

Yeah, let's give my wife a UTI for no good reason, shall we?

NO.

Idiots. No one *thinks* anymore...

Sorry, got off on a tare there.

So, yes on the PEG tube, NO on the amputation(s). Let's apply basic triage rules here, shall we? Let's concentrate on weaning off the vent, hmmm? Because EVERYTHING ELSE flows from there?

I think they hate seeing me walk in... too bad.

So... that's where we're at at the moment.

Neurologically, she's in there, but uncommunicative. Ticked her off but good last week; it was time for the "you need to fight, stay awake and not retreat into your head" talk. Yes, I'm a merciless bugger; but only because I care and that kind of honesty is at the heart of our relationship.

Plus, she'd do the same to me.

So if I need to tick her off to get a reaction, to get her to fight, I will.

Kids are hanging in there for the most part. Katie, my daughter, is suffering nightmares... but nothing that prayer, warm milk and a lullaby from Daddy won't cure. Thomas, my son, is the more emotional of the two... but is handling things well. He internalizes, though.

But for the most part, they're dealing with it well.

Me? Still fighting. Still managing.

"Never give up, never surrender."

Stay tuned, I'll be back next week.

...

Same Bat Time, Same Bat Channel.
"All you need is in Fitzkee."
Zombie Magic
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Brother, I'm so sorry you and your Kim are going through this. We think about you everyday here and pray.

Unfortunately we end up being the trained professional in these areas. They got to medical school for 12 years, but we have to raise issues and point to possible solutions. Why, I don't know.

Thanks for taking the time to share what you're going through.
Dr_J_Ayala
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Good for you Ekuth for having the right attitude through these dark and trying times! As for the kids, it is always hard to see someone they love going through this, let alone their mother, no matter how tough they are. With you there they will come through it just fine, and Kim will too!

As always, you are all continuously in my thoughts and prayers!
djurmann
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Keep it up!

You are an amazing man with an amazing family! Positivity and goodness coming your way.

Best wishes,

Danny
Ekuth
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Update:

Sorry it's been so long, Ladies and Gentlemen.

I figured you'd prefer a substantial update rather than bit-by-bit. Plus, there really hasn't been much change until lately.

So...

Kim's been moved from the ICU care facility she was in to a lower level of care facility, this is a good sign.

It's farther away, though, so her mom and I have been trading days going to see her... we go every other day, so that way one of us is there every day. With the cost of gas and distance, it works better that way. Also provides a mental break from the day-to-day stress.

She's still on the vent, but is doing much better on the weaning. They've run her on the CPAP setting on it's lowest assist level for a week and a half, and are now getting ready to move her off the machine and to the next step, which will be some sort of bag with moisturized air.

This will be a big plus, as it will unhook all the *** tubing (well, most of it) so she'll be mobile and we'll be able to wheel her around and get her outside for some fresh air. That will do her good, I know.

The nose tube they were feeding her through had to be removed, she kept pulling it out- can't blame her. Plus, you can only leave them in so long and the tube diameter isn't big enough to provide adequate nutritional levels; so I approved the placement of a PEG tube. This is a surgically implanted tube that goes into the top of the stomach. Larger diameter, so increased nutrition flow. She did well in the surgery, and they have since switched her from Nepro to what is basically Ensure. Looks the same, smells the same.

Had a new wound doctor in since the transfer, was fortunate enough to be there when he showed up. He completely agreed with my diagnosis of the necrotic fingers; so there's yet another unnecessary procedure that I've saved her from. I'm starting to loose count... the blood flow to the fingers is getting better and to my (rather critical) eyes they're starting to heal. Worst case, they'll self-amputate. That's polite medical jargon for saying they'll fall off... hungry now?

Regardless, it was nice to have some validation. Her primary LPN is a good one, she's happy that I've been very active in Kim's treatment and that I'm not afraid to put my foot down if I feel it necessary. She's one of the rare ones that actually CARE about their patients. God Bless her, and I hope she doesn't lose that.

When they moved her to the new facility, the doctors jerked her insulin regimine around- she started having lows... turns out they weren't giving her any long-lasting insulin (Lantus) and only correcting with NPH (regular insulin). In order to understand this, I have to explain the difference: Lantus, or long lasting, works steadily over the course of 24 hours, while the NPH (regular) works on an immediate basis. With brittle diabetics, you have to establish a 'baseline' or basal rate of between 80 to 120. Well, that's too low for Kim. It may be what the textbook says is optimal, but if there's one rule with Kim, it's that she's the exception to the rule.

So, by giving her only short acting insulin, they were 'chasing the tail' of her blood sugars and causing too many peaks and dips in the basal rate line. Well, to be honest, they destroyed the basal rate completely. Think of ocean waves; the waves crest and valley. The Lantus evens out the waves; then you correct high sugar spikes with the short acting insulin.

So, once I figured out what was going on, I told the nurse to inform the doctors of the correct dosages. Lantus once a day (generally at night) and then NPH to correct on the sliding scale. I'll spare you the explanation of the sliding scale- managing diabetes gets complicated and it took me about a year to learn Kim's basal and scale so I could administer properly.

So.... fast forward to two days- she's still having lows. The nurse informs me that the doctors were giving her 10 units of Lantus at night and another 6 in the morning IN ADDITION to the NPH. If you've followed me this far, you can imagine what this did. Using the ocean wave analogy, imagine two sets of waves crashing into each other, creating eddies and dips and chaos.

WHY the idiots would give her a double dose of a 24 hour insulin is beyond me, so I hit the roof (metaphorically speaking) and told them to stop the Lantus in the morning and JUST DO WHAT I SAID.

They did, and needless to say, her bloodsugars are back on track.

Blood pressure has maintained good levels, thank the Lord.

So, the long and the short of it is that she's doing MUCH better weaning off the vent, blood pressure has stabilized and we've gotten the blood sugars under control now that the doctors pulled their heads out of their collective gluteous maximus'. With luck, she'll be moved to the next step in weaning tomorrow or the next day, so keep your fingers crossed.

Mentally, she's still in there and responding, although she still likes to 'play possum' and keep her eyes shut and listen. Speech we won't be able to tell until the trache is capped off with the speaking valve. That will give me a more accurate baseline of her mental state and any lingering damage we'll have to work with.

Emotionally, she seems better, so the anti-depressent is taking effect. Still ups and downs, though.

Motor skills/coordination will definately need work. Tremens are in evidence and she's showing autonomic twitching. Those should work out with PT and MT therapy, though.

God willing (and my personal prayer) is that we'll have her home in time for Christmas.

Kids are doing well, a few homework issues, but nothing beyond the pale.

I'm maintaining fairly well, though I have my dark times and I seem to be unable to break the insomnia cycle. More stuff on my back and tests, but that's not worth going into.

Gigs have begun to really pick up, thanks to Halloween, so I'm going to be busy this weekend... double booked on Friday and have one on Saturday too, as well as two possibles that haven't confirmed yet.

And that's all there is for now.

As Garrison Keeler would say:

"Be well, do good work... and keep in touch."

Until next time, folks.
"All you need is in Fitzkee."
bwarren3
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Ekuth,
Man I know exactly what you & your wife are going through because after reading all of the love and support you are getting here, I just got out of the hospital after 6 weeks, the last 4 being complication after complication after complication, it never seemed to end.
Prayer is really the only thing that kept me going and pulled me through 5 Lung procedures in less than 3 months...I barely survived them but rehab is killing me, have zero leg strength from being laid up for so long, but having to take off days during the week and do nothing but rest means no busking....Have been able to do a couple shows per week, have 2 tonight which probably won't be able to make because of Doctor appointments all day. They will probably wipe me out.
I have friends from Montana to Va whole churches praying for me during this whole ordeal, never ever stop praying....
When they wheeled me into the OR for the first surgery, I felt this INvisible blanket of protection being placed around me and was there through the rest of the time I was in the hospital....it was amazing, He still works miracles, I watched them as they unfolded so never ever stop praying because it still works you just have to not give up man....The Magic kept me sane while I was there....I had buddies come over to the hospital and do magic, some played guitar, they also kept me sane...
I have been sending prayers ever since I read your first post....You floored me...you definitely keep her best interests above everything else because YOU do know more than some of these other Docs, I had the same problem in the hospital and am now dealing with other Docs during rehab. For instance, still have some fluid on my feet and lower legs but it has gone down alot. I've doubled the Lasik to help get rid of the fluid, had to go to triple dose for a couple of days and it worked now back on just twice a day. My Cardiologist wants me to go to 4 times a day but hey I'm sorry I am not willing to purposely Tank my Potassium just to get rid of the last fluid which will go away in another week or two, it's just not going to happen, what the heck was he thinking, his NP wanted the same thing and I told her I was not going to do anything that would take a chance on getting me admitted back into the hospital after just being out just 2 weeks and tanking my Potassium would do that, had that happen about 2 years ago and it took me a couple of weeks to get out of the hospital, never again...
Anyway, didn't mean for this to be a novel, but the magic will help keep you sane and talking to yourself, even though I had to lock the bathroom door in the hospital to get some privacy to have my talks with him in private, they worked. Hang in there and we are all still sending prayers your way for both you & your wife because she isn't out of the woods completely yet.....Bill
Dr_J_Ayala
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I am glad that things continue to get better for you Chris! It would indeed be a blessing to have *mom* home in time for Christmas - a truly magical time of year. Continued thoughts and prayers are en route to you!

Keep up the hard work!
Ekuth
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@Bill: Amen brother. I hear you, and understand exactly what you went/are going through. It's a delicate balance, and they seem hell bent at times on making things worse, not better. I swear, doctors aren't trained to think critically anymore. Just follow the book... gah. I'll add you and yours to my prayer list.

@Dr.J: That's my hope, my friend. Gonna be tough if it doesn't happen.
"All you need is in Fitzkee."
Dr_J_Ayala
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Ekuth said:

Quote:
...I swear, doctors aren't trained to think critically anymore. Just follow the book... gah. I'll add you and yours to my prayer list.


Before we got them under control, my wife used to get migraines so debilitating and painful that she was ranked within the top 1 percentile of the nation, which all started when she was six. Having said that and regardless of any notes in her medical records, every time we went to the ER and they were told what was going on, they treated her like she was a common junkie because she needed such ridiculous amounts of pain killers to help her. None of those doctors knew their butts from a hole in the ground until we FINALLY found ONE doctor that actually, genuinely understood what she was going through because he had personal experiences with migraines of the same intensity.

Doogie Howser may have been a fictional character, but that is exactly what doctors and nurses should be like as far as their level of training, competency and knowledge base is concerned - they need not be geniuses.

@Bill: All the best to you on your continued path to recovery as well, and break a leg with your gigs!
Eric the Excellent
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Oh, jeez. Your wife is lucky to have such an attentive caretaker as you. As for those medical "professionals" you've been dealing with; things at a hospital move quickly and sometimes they just get wrapped up in the numbers, or the charting, or the "routine" of it all. Keep those &*^$*@& in line!

I'm glad to hear that you got some gigs! Let us know how they went, when you've time!
Ekuth
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Coded again Monday. Moved to new hospital; Banner Gateway. Less far than the care facility. Hope she stays there until she comes home. Tired of this back and forth. Tired of this period.

Neuro okay from what I can tell. Was alert and responding when I got there.

More as details warrant.
"All you need is in Fitzkee."
Dr_J_Ayala
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Hopefully this will provide a much needed set of fresh eyes (actually, multiple fresh sets of eyes) to look in on her situation. They may see something at this new place that nobody else did, or someone may know more *gasp* than the people at the other hospital about what is actually causing all of this. Here is to hoping!

Just keep the kids safe, happy and healthy, and remember to take care of yourself too.

"The rainbow thrower squints his eye and hurls his colors 'cross the sky, while far beyond Horizon's gate, the rainbow catcher sits and waits."
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