Another day

Edit - Spoke with nurse again, now has a fever, no Lasix because of low bp, has not lost any fluid since arriving, and she is talking to deceased family that came to sit with her.

 Hi folks.  I wasn't able to speak with Carole yesterday, so weak.  I just did this morning, she is miserable, very shaky and still weak.  Blazing infection that I saw on her report yesterday (myChart), they don't know where and are culturing today but started a broad spectrum until answered.  I did not know that could cause b/p to drop (70/40) which prevents fluid release.  But her numbers were good for two weeks with no fluid releasing so don't understand.  Meds to raise it are being monitored closely because I guess this affects arterial pressure (which is high) when HF is present.  Her nurse in ICU is outstanding, so informative, and takes her time with your calls.  We still don't know what to expect, and I'm afraid to ask. 

I started the sampler with color changes, have very little stitched, and love it already.

Raining today, the boys are in their happy places, and Missy is somewhere inside making trouble.  Nit is still not happy with Petey and tries to steal his house, but had to settle for the old one today.  Since the weather has warmed, he prefers being outside.

Bud is so very thin, wants to eat, and does get a little in before he bolts.  

Enjoy your day.

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Change

 We're packed and ready to leave, but aren't going to Cleveland now.  She had a right heart cath this morning and will spend several days, tube still in place, in the Heart Failure ICU.   But since there is no chance of a bed in that section for days, she must wait and stay at the ICU she is currently in.  They haven't been able to remove a drop of fluid, still swelling, can't correct the leg blockages until her heart is better.  They don't know if they can help but will try different medications, the first is nitroprusside drip.  No visitors.

Mark was going with me and would have had to stay at the hotel all day, and that will be the case when we get there, maybe next week, if they can help her.  The doctor said once they get the efficiency improved, the fluid should start to reduce.  Her initial visits after the TAVR mentioned the surgical mitral valve repair that would greatly reduce the heart strain, if she can handle it.  We also learned that the TAVR surgery from Cleveland is not optimal.

Your kindness and concern regarding Carole is so appreciated.  We all at some point in our lives need to address loved ones suffering or our own.  Those of us that only have a few remaining, can't seem to deal with it.  My months of anxiety dealing with the incorrect diagnosis really affected me in several ways, and I am grateful that I sought another opinion before Carole's crisis.  All those fears and emotions are now directed toward my sister.  We are hoping to have better news in the coming days, and I will certainly be happy to report them.

I decided to jail all three brats inside since they do spend time here, moved things to accommodate two litter boxes, two trays for various foods, Feliway for the terrycloth beneath Bud's dish which helps, notes everywhere as to which doors are most likely an escape route, Petey's dish sunk into a low crock so the critters can't carry away, supplies and food notes.  The garage is also a good choice if we can add perches to get an outside view.  We'll see what happens.

Decided to take the new chart with us and pulled several additional colors for the border.  Original chart photo and a few ideas for color options.  

I think I prefer the brighter colors but will probably not change the colors in the body.

I was studying Jane Southward's chart.  Did I pay attention to the over one section, usually a feature that removes a sampler from my wish list?  Did not.  IG photos of a new start was so lovely that I investigated no further.  Always an option when it is contained to substitute other elements.  A reader mentioned that she doesn't stitch many reproductions because most have reference to God or religion.  Started me thinking ..... do you ever consider the message/verse in a sampler when choosing?  Would it cause you to purchase or reject?  I have to be honest, I don't care and most times don't even read it until it's in my hand.  But she brought up an interesting question for sampler lovers.  Does the verse influence your choice?

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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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