Restricted

 Helpless.  Incapable.

They have not been able to reduce those 17 pounds of fluid, and have taken her off all diuretics.  Not in her lungs, but unable to breathe with any movement.  No answers.   She saw one doctor upon arrival Saturday, none since.  They told her here that if this is lymphatic fluid from her destroyed channels, not much they can do.  But we still don't know.  

I've been there twice before during her crises, but was not damaged.  My brother does not feel I need to be there until a diagnosis and treatment is determined.  My husband offered to go with me but he would be sitting in a hotel room for days. Originally, he said he would sit with Carole and I could try to calm down in the room when needed.  No.  You must be registered as the only person allowed to see the patient, NO CHANGES.  If he stays here, I don't have to worry about Bud.  Carole told the nurse her son would schedule time off for the procedure/surgery and was told he needs to stay in the lobby and cannot see her.   I need to be checked every time I come in, and also daily at the hotel.  Honestly, if family was permitted to stay in the patient's room as before, they would not be exposed to the restaurant, other visitors, car service, every time they left the room and came back.  To me, that is safer, but not allowed.  I do not want to take an Ativan every morning but I don't think I have a choice.  So the plan is to hope she is given some information today and take it from there.  My family feels I am too fragile, but she is so scared and alone.  Chris cannot take off a week of work but is riding with us to drop me off, planned to run in and say hello but can't.  I don't want Mark driving himself so I'm glad about that.  I need to hear the plan, that they can help her, because if I can't settle my emotions I will do more harm and remove any hope she may have.   Not being vaccinated isn't too much concerning since they are so strict there, but I do not know if I can wear a mask all day, need to add grease to my lips and mouth at least twice and hour which can be done when alone.

Missy and Nit can be locked in the garage for days and cry all they want, food water litter provided by others.  But Bud can't.  He is too weak and eats a tiny bit at a time, the other two will finish it before he would.  Continual coaxing of various flavors throughout the day will not be happening which he needs, but he would be hiding anyway.  I honestly don't know what to do.

To be continued.....

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She's there

 Finally.  The vascular surgeon works with Dr. Estep (her HF doctor), she saw a cardiologist almost immediately, they started working on her after realizing she had gained 17 pounds of fluid since the angiogram Monday.  She called me at 3am last night, could not get the doctor until 6, very sick.  So glad she is there now and will have all issues cared for.  Cleanliness, care, comfort.  Wider, softer beds, privacy.  I told her to lay on that large bed, tell her head to drop, arms, legs, and relax.  Rest.  I have to do that!  You think you're loose and relaxed until you tell yourself to drop it and feel the tension release.

 One visitor only, and I can't stay in the room with her this time.  Hoping to get info tomorrow on their plans so I can make reservations.  The connected hotel would be easiest but there are no openings, we'll plan it out tomorrow.  We would leave tomorrow and just stay as long as needed but these damn brats are the problem.  

Hope to be back with news of treatments that will help and feeling confident.

Have a nice Sunday.

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Gigi R

No improvement in Carole's condition, but no worse which is good, and still no room for her in Cleveland which surprises me after six days. It may be another week.  Chris has been vaccinated and visits several times a day but I am not.   No concern for Cleveland, larger single patient rooms without the parade of people and changing patients at this one.  My sister is good with that because besides her angel nurses, another has been verbally abusive and nasty to several elderly patients and deserves to be thrown out the fifth floor window.  Even without her broom, I have no doubt she would land on her feet.  My brother told Carole to request the supervisor before being discharged.  Filling out a survey after can be dismissed by the accused claiming a demanding and belligerent patient.  But not if the patient reporting abuse proves to be reasonable and sincere during that meeting.

Tried to relax and browse online, always find samplers from Gigi R that I love. I envision Margret Withrow with vivid colors in the floral border, and after seeing a start of Jane Southward, added her to my growing list of more involved samplers that I would love to work on one day.  I've not spent much time online recently so I have catching up to do.  Stitch and Frog shipped these two the same day I ordered and they'll be here Monday.

I forgot to mention something I learned at the pulmonologist's office.  I am still short of breath and although the lingering anxiety is contributing, he said the recent addition of Metoprolol may be the reason.  Did not know this is a side effect for some people and he said many of his patients experience minor to major changes.  My heart monitor appt was moved to the end of month because of the uncertainly of time frames for Cleveland.  I won't see my cardio for the result until April so I'll mention it then.

Your caring and kind comments, emails, and cards have made a difference and I thank you once again.

Enjoy your weekend and stay safe.

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Vents

They are in my walls, furnace, floor, and roof.  Even combined they would not be able to handle what I need to expel.  Thank you for your caring, there is still no bed for her in Cleveland after four days but she is next on the list from her current hospital.  Tonight's IV contained a dose of 120 mg Lasix.  Still not releasing the fluid after her lower angiogram during which her blockage could not be opened (hoping Cleveland can).  To say this is scary combined with heart failure is not even close.  She's been in this hospital for over a week, dehydrated, weak, uncomfortable, terrified.  Am I helping alleviate her fears?  Impossible when I feel like the ground is gently trembling, waiting for it to crack open.

I was devastated and unable to cope with the "rapid onset and progression" of fibrosis by the PA almost two months ago.  Started relying on medication to cope which I received from others because this doctor office refused.  I took it upon myself and called another doctor not affiliated with them, saw him yesterday.  And now, the louvers on my vents are wide open and blowing uncontrollable emotions.

Except for the GGO grouping that needs checked in six months, there is no fibrosis shown on the CT scan.   He just kept shaking his head, my reports in his hand, and was stunned that I had to insist on the scan.  More ridiculous he said, is the fact that she told me fibrosis does not show on a CT, yet she takes the subjective result from an xray which many times can be an error in perception by the radiologist.

I have been in this state of mind for some time, am questioning everything, unable to let go.  I did several weeks ago and was thrown back into that black hole.  No trust, nothing tangible for proof.  Could the PA really be so foolish?  Or did the radiologist that read the scan miss it?  Is this ridiculous?  I am just so fragile and worn down that I can't cope or let my guard down.  I need to snap out of it and be extremely grateful, which is difficult until Carole is out of danger.  

Today is the 20th anniversary of my dad's death because of a doctor's failure, and when I saw that punk in Macy's parking lot a few weeks later, he turned and ran back to his car.  What about this PA?  So sympathetic and sweet, do I tell the doctor how her irresponsibility caused such mental and physical distress?  At a time when I need to function and have some stability, her recklessness took that from me along with ever feeling safe or trusting a medical report.  Or do I just follow her for two months and make her feel the fear and anxiety she put me through?

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My sister

 is not doing well at all.  Transferring to Cleveland Clinic today or tomorrow, Mark and I need to make arrangements but it's difficult with Bud needing constant supervision, the others will be locked in the garage and my brother will have to visit for food and litter. One person was able to overnight in the patient's room before, but when they moved her to ICU I had no where to stay.  A guaranteed room will be easier on my nerves.

I can't even begin to describe the anxiety and panic and stomach upset that's been consuming my days after my last doctor visit, had no idea how much worse it would become.  Thank you for your notes and caring.

I've tried stitching for a moment of calm, but it's brief and error filled.  I do not like this design but since it was started and I don't have to choose linen and thread colors for another, purpose is served.  I am changing the motifs because I don't like several colors in small areas creating chaos.

Elizabeth Roberts - Threads of Gold

Be well, stay safe.

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Never ending

 I thought I was settled, until today's appointment where I was told a mess of nothing.  The fibrosis is at the bottom, the infiltrates are at the top.  One wasn't mistaken for another, I have both, so my bubble burst and I went from fear to relief back to fear.  Still no answers, still no referral from 9 am.  And no Rx for a few Ativan.  My cousin's wife recommended Trazodone which is an antidepressant that helps with anxiety and sleep, non habit forming and without side effects.  Whatever.  If I hear nothing by noon tomorrow, I am calling Cleveland Clinic, this is ridiculous.

Carole is now in the hospital, straight from the doctor office.  She will be there for a while and they are not sure what's going on with her lymphatic system and CHF after weeks of her feet becoming huge.  She does not listen to me, always waits until the situation is severe, and will end up in Cleveland I'm sure.  My untrained but usually correct mind says cellulitis.  Huge water blister and others on toes, painful touch, red, swollen.

Petey has a leg injury that appears to becoming infected, Bud is back in his shell, we have no one to care for these brats and especially when Bud needs almost constant coaxing.  Leaving to stay in Cleveland may be necessary but we'll see what happens.

We have no mail service since the street is blocked but there is a package on my step that I will open later.   I am just spent right now.

I did choose two samplers to start but honestly, I doubt that will happen until some answers will clarify both our ailments.  It's a damn shame I dislike wine and other such beverages.  Someone asked how I tolerate those citrus candies.  They are not chewed, rolled, or in contact with my burning tongue.  Kept between cheek and gum, I can swallow the dissolving juice without involving my hot zone.  And they aren't even close to the acid in fresh citrus.

I have chosen Ann Stone (old R&R) many times but never pulled linen or threads.  Solid color section at the bottom, a small amount of over one.  The other is  Rachel Hyde with that fabulous vine border and line of trees.  It looked large to me but it really isn't.  More over one than Ann but doable I guess.  

I just heard from Carole and she said they may be moving her to Cleveland.  The dentist today told me to come tomorrow afternoon, this cavity is so close to the nerve and it must be covered now.  But I may not be here.  I wonder if visitors are allowed because I would be able to stay in her room and then check out doctors there.  I do not think anyone here will have any answers.

But I have a package and can't remember an order so I best check it.

 

Enjoy your evening folks.  

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