Husband Update #2

He has now been in ICU for a MONTH!!  He continues to improve by leaps and bounds; it seems to us.  There were some scary moments - like when they wanted to put a PEG feeding tube in.  Once they mentioned the procedure, I noticed his blood pressure started to tick up.  When the OR team came into the room to get him for the 10 minute procedure, his blood pressure spiked so high, I was surprised his heart didn't just explode.

Bonus daughter and I were beside ourselves.  They were finally able to give him drugs to help calm him and were also able to sedate him for the procedure.  What followed after that was a scary high fever that had everyone kind of worried.

By the next day, things had gone back to "normal" (if you call being in ICU for a month and all that entails "normal").

From there, we have continued to see improvements.  Things like, him being removed from the ventilator and placed on a CPAP machine during the day.  Being moved from the CPAP to a vent collar during the day.  All things that he was tolerating really, really well.  But were improvements, that my husband could not measure.  Until today

Today the speech therapist came and placed a seal on the trach.  I'm not exactly sure what the purpose of the seal is; but as I understood it - it would help him be able to speak, and if he can pass the swallow assessment tomorrow, he should be able to start eating and drinking soon.  No sooner did she put the seal on, he was able to speak.

Is it raspy and a little garbled?  Yes.  But otherwise completely understandable.  I think even she was surprised that he could speak so quickly without working up to it.  But apparently, all his muscles needed were still strong enough even after a month of disuse.

I'm not gonna lie; tears sprang to my eyes when I heard him speak.  It was such a big, big step.  Needless, to say he was overjoyed.  And the next thing he asked was "Eat?" And that is when she had to explain about the swallow assessment.  

He informed me later that he was getting excited because, I assume, he could now see a marked improvement in his situation. He also informed me he wanted ice cream and he wants to come home.

He has also started to receive PT and OT.  And I think this is where he is now realizing that he is much weaker than he realized.  Now, it is extremely limited due to the hospital's limited resources.  Because as we all know, the goal is to get the patient OUT of ICU; not keep them there.

Which circles us back to the insurance issue.  They continue to deny that my husband is in need of Long Term Care.  At first they denied us because he was TOO ill and now they are denying us because he's TOO well.  WTF? Despite the doctor telling them repeatedly, that this patient is the perfect candidate for Long Term Care.  

What I don't get, is either way they are going to have to pay.  Either him to remain in the hospital or to go to Long Term Care or in-patient rehab.  So why the denials?  We continue to fight this battle.

But as of now, we are in a holding pattern. So currently, the plan is (while we fight this) to keep him in the hospital; continue to try and wean him from the vent and get him medically healthy enough for in-patient rehab (that the insurance company better damn well approve - at this point I have my doubts). One of the major things that needs to happen to get him into in-patient rehab is getting him off that vent permanently.  They won't take him otherwise.  Currently, he is only on the vent at night - so we are making some progress in that area.

But just being able for him to communicate clearly with us?  Such a huge, huge blessing and improvement.  I am so grateful. 

Husband Update

 Friends, thank you so much for the love and support you offered in my last post.  It means more to me than you will ever know; realizing that I have so many friends in so many corners of the world who are pulling for us.  Thank you.

The Husband continues to make improvements; he doesn't see it - but we, the family and staff, can see just how far he has come.  This coming Tuesday will mark 3 weeks since he was admitted to ICU.  THREE WEEKS!

He, of course, doesn't really remember the first couple of weeks because he was under heavy sedation.  He is only now beginning to realize what is going on, retain information and seems to understand what comes next.

What's next?  Well, if we can ever get the insurance company to sign off on it, he will go to long term care for aggressive PT.  And based on what I am seeing, I think that will pay off sooner than our son seems to think, (Personally, I think our son is trying to soften any blows if he doesn't recover as quickly as I'd like) because I can already see that he is starting to try and work his muscles and regain his strength.  As he knows the sooner, he can do that the sooner he can come home.

His current frustrations are lack of water, food (they need him to work with a speech/occupational therapist first to ensure he can swallow properly so he doesn't get food or water in his lungs - which would set his progress back significantly), and the inability to communicate clearly.  It has become abundantly clear to me that I will never win any awards in either lip reading or charades.

Today he asked, I'll admit it took us a long while to figure it out, when was Thanksgiving.  Which made it extremely clear that he had no real idea how long he's been in the hospital. Which, I can imagine, spending day after day on a loop, (not to mention the sedation) can take a real toll on your sense of time.  He also asked, the sweetheart always thinking of me, if I was eating.  He knows I'm not a cook (I mean I suppose I COULD if I HAD to) and I told him that friends were feeding me and when they weren't, I am eating (not the best of foods, but still).

Circling back to insurance.  We have appealed their latest denial.  And here's what Aetna (AetNAH, anyone?) needs to know.  We will continue to appeal AND we will begin a targeted campaign until they relent.  Because as far as I am aware, ICU does not have to capability to wean him off the vent successfully (I mean, I suppose they could but long term?  Does not make sense) and to do aggressive PT.  I did ask the doctor today what our other options were if it came to it - because as much as I want him home - I cannot adequately care for him in this condition.  Nor could I lift him or move him, as needed.  Unfortunately, all the doctor could do was express his frustration with the insurance company and tell me that we would need to talk to the case worker about that.  So, as you can imagine, we will be talking to him/her first thing tomorrow. 

The children?  Well, a perfect storm began brewing last week, as my bonus daughter's mother-in-law was dying.  Needless to say, she drove off to Ohio to be with that family as she rightfully should have.  I can only imagine how torn she felt.  She will be returning to us tomorrow.  Our son had a trip to San Francisco planned (a birthday surprise for his wife) and he waffled on going until it became clear that we would not be moving The Husband any time soon, and he felt confident in the level of care his father was currently getting; so I sent him off with my blessing.  Which left me holding down the fort this weekend.  Thankfully, local friends have been stepping in to fill the gaps when I have to leave in the evening due to utter exhaustion. 

In the meantime, ob-la-di-ob-la-da, life goes on.  In between hospital visits, the business of life continues to roll on and while it does, we will keep praying that he continues to improve.  All of the professionals that have been attending are extremely pleased with his progress; which continues to give me hope.

Thanks again, for all your love and support.  xo 

Zero to Sixty in .9 Seconds

Seriously, that is how fast everything in the past couple of weeks has happened.

When we last left off in this saga, The Husband - while not well - was fine.  Completely fine.

Until he wasn't.  When I woke up on Tuesday (7/14), he informed he hadn't slept all night, had a fever and chills and said he didn't feel like he was breathing right.  He then took some ibuprofen, sat in the chair and slept for about four hours or so.  When he woke up, he was fine.  So fine that he took himself off to visit Starbucks and the grocery store.  Then he came home and made lunch.  It was all completely fine and normal.

A few hours after lunch, he began to feel feverish again - along with chills so bad he turned the heater on IN JULY IN THE MIDDLE OF A HEATWAVE.  Finally, he called our friend two doors down (remember, she is a nurse).  She, of course, was in the middle of her workday, so she told him to call his doctor's office to see if they could/would squeeze us in.  Of course, they couldn't as it was about 3:30 or 4:00 pm by now.  So we talked to the nurse at the office, she had us take his blood pressure which was DANGEROUSLY high and told us to go to the ER immediately.

We must have hit that ER at just the right time because no sooner than we walked in, the triage nurses came to take his temperature (104) and blood pressure (I didn't know this at the time, but was told later it had plummeted) and see what brought us in.

Immediately, after that they came for a chest x-ray - despite the fact he had one in his chart from the previous week.  I think they were looking to see if it was heart failure.

And then we were whisked off to an ER room, as they were checking him over and the doctor was telling me that they would most likely admit him - I don't know what happened  - I don't know if it was a panic attack coupled with the severe chills or if it was a seizure.  All I do know is it was absolutely terrifying.  They called for a crash cart and sent me away. 

As you can imagine I was shocked and scared.  My friend two doors down knew what was going on and sent her husband (since she was still working) to sit with me while I waited to see my husband.  I was so grateful he was there since I was absolutely losing my mind.  He is absolutely the best person to sit with you when you are losing your mind - so calm and reassuring.

When we finally got in to see him after he was stablized; they had to entubate him, which honestly, I was not expecting.  Seeing my husband out cold, totally sedated and with a tube down his throat was terrifying.  The ER doctor explained what she thought was going on (pneumonia) and that he would be admitted to ICU.  Standard procedure for an entubated patient.

We got him up to his room and got him settled.

And then began the longest days of my life.  By Saturday (18th), we were seeing very teeny, tiny improvements; but still entubated.  By now, we also knew that it was NOT pneumonia and had learned that my usually healthy husband's lungs were badly damaged (we assume from the nasty natural gas plant he had worked at for years when we lived in the Houston area).   And that there were some other - less terrifying underlying issues.

And we waited.  Until finally, I think it was Tuesday or Wednesday this week - we had to have some very serious discussions about how we go forward.  By now, both kids had made it so I didn't have to make any decisions on my own, THANK GOD.

The ICU doctor felt certain that if they put a trach (still on the ventilator for now) we could move him to a long term care facility for rehab and weaning him off the ventilator.  He warned it will be long road to recovery but felt that maybe, eventually, they will be able to even remove the trach. 

So we had the trach put it on Friday and the plan was to start to bring him out of sedation.  But then, of course, there was a hiccup in the middle of the night and they had to replace it with a larger tube. So, as of yesterday he was still under pretty heavy sedation.

When I arrived this morning, they had cut back his sedation quite a bit and he was awake and alert, so I could talk to him and he could see me.  Of course, he can't talk and I am sure he is very confused and anxious because he doesn't know what is going on.  I'm sure the last thing he remembers was checking into the ER.

So now, we are in the wait and see mode as we wait for the transfer.  I will say that the nurses and doctors and the care they provided at this hospital were top-notch.  I can only hope we can say the same for the long term care facility.

And once he gets there, he is going to have to work really hard so he can come with me. 

As the title implies, once this ball started rolling it snowballed so very quickly.  In fact, I'm still shocked at how quickly it all unraveled.

Send your prayers, thoughts and good wishes, please.  We certainly need them right now. 

Ugh...Life These Days In The Gigi Household

 Friends, things here have been HEAVY.  Hence, my recent lack of posts.  I don't want to drag you down with me.

We are quickly approaching the two year mark of my unemployment.  As you can imagine, this is a very heavy weight, particularly as I was the primary bread winner for the last few years.

But, I am beginning to think it is probably a good thing that I haven't found anything just yet.  As most of you know, my husband is significantly older than me (12 years) and is beginning to have a few health issues (nothing too serious that we know about yet anyway). And it has become quite apparent to me that he needs me to advocate for him.

He has high blood pressure (genetics and anxiety are the root cause) and has been on Amlodipene for years.  Well, it caused his legs to swell a ridiculous amount and it was getting worse.  I've told him to talk to his doctor about it.  And every time he did, the doctor just said that was a side effect.  So when he went to see his doctor this last time, I went with him.  I looked that doctor in the eye, while pointing to my husband's legs and said, "This needs to be resolved now.  Not only can he barely get his shoes on, he is uncomfortable and has a hard time walking." (there are other issues from the swelling that I won't get into here).  Needless to say, we came away from that appointment with a couple of referrals - including one for a sleep study because he's not sleeping well, which I am attributing to possible fluid around his lungs (if he's got that much fluid in his legs, you can just assume it's everywhere at this point) and apnea - and he is now officially off Amlodipene and on something else.  To be honest, this should have NEVER gone on this long.  And the fact that he never pushed back with the doctor in the first place irritates me.

The doctor we saw yesterday, put him on a strong diuretic and the swelling is slowly coming down.  And the doctor we saw today told me that it will take some time since he was on the medication for so long.

I have been discussing these issues with my friend two doors down (she's a nurse) throughout all of this and she looked at me ad said, "You know you are going to have to go with him to every doctor's appointment from here on out."  And I agreed.  Because it has become increasingly apparent that not only will he not advocate for himself, he won't ask questions.

How do I know this?  Because back in December he had to have a bit of skin cancer removed from his leg.  He was told to put this cream on it and keep it covered because they didn't want it to scab over.  Did this man ask how long he should keep it covered?  No, friends, he did not.  And then unilaterally decided after two weeks that it didn't need to be covered any more.  When he went back for the follow up visit in January he was told it should have been covered this whole time and to keep it covered.  Again, did he ask how long he should keep it covered?  No, he did not.  And that's when I put it together and realized that I need to be in the exam rooms with him to advocate, listen to what he might miss and ask questions.

 So that is where we are at this point in time.  I still don't have a job, and apparently don't need one as I am now his full time healthcare advocate - which for the next month or so looks like a full time job in and of itself.

Me, my friend, and the doctors are all of the mind that if we can get the swelling down a lot of the other issues will take care of themselves.

So all that to say, advocate for yourselves and pay attention to what your spouse is doing regarding their health; because they may very well need you to advocate for them.  And, if you are on Amlodipene, keep an eye on your ankles and if you notice ANY swelling get to the doctor immediately to discuss alternatives. 

Book Review: One Second After by William R. Forstchen

 Hi Friends!  I know, it's been a while.  But honestly, without having very many interactions with people other than my husband, there's not too much to talk about.  BUT, I am here today with another book review, One Second After by William R. Forstchen.

 I can't remember where I heard about this book - but I have a vague notion that Stephen King may have mentioned it on Threads.  And if Stephen King recommends a book, I am ON IT.

If you like a dystopian novel (Nicole, it's okay, I know you've already NOPED on out), this one may be for you.  It's a story of man trying to save his family and his small North Carolina town after America loses a war (a war they didn't even know about) in ONE SECOND.  An unknown enemy set off three weapons above America's atmosphere which set out Electro Magnetic Pulses (EMPs) across the country.  Wiping out any and all modern conveniences - basically setting the country back hundreds of years.  Think about it.  Our cars have tiny computers - so they just stopped in their tracks, as did the trains.  There was no electricity.  No indoor plumbing.  No internet.  No communication with the outside world.  Everything just STOPPED.

As you can imagine, there was panic.  It would take the town's leaders to calm the people, figure out how to ration the remaining food and medicine to feed and care the townspeople.  To figure out how to navigate everyday life.  And hope, that there were some people out there who knew how to wrangle old technology.  To figure out justice and to protect themselves from marauders who were roaming the country trying to take what little people had.

It was an intense read; particularly when you begin to realize this could actually happen today.  These are weapons that could potentially be deployed right now.  *shudder*  And makes you REALLY hope that those in charge (yeah, right with this administration? Not likely) are making up plans in the event this happens because in the book these people were caught completely off guard

It was only after I read this book, that I found out it is actually a trilogy.  I have already placed a hold on the second book - which, of course, came in AFTER I had already left the library this afternoon.  I think I'll go ahead and place a hold for the third book and will collect both when that one comes in.  

At any rate, if dystopian fiction is your jam, you may really enjoy this book.  If you can overlook the possibility of it being reality, that is. 

(Audio) Book Review: Educated by Tara Westover

 When I opted to borrow this audio book, I was not aware that it was a memoir.  Not that I have anything against memoirs; but they are not what I usually gravitate toward when looking for something to read (or listen to).

Tara was born to survivalists in the mountains of Idaho.  Well, she says survivalists, I say cult, but whatever.  There was no formal education, they were fairly isolated from mainstream society.  There were no doctor's visits, no dental visits.  Instead the family relied on the mother's (a herbalist) remedies - even for the most horrific injuries.  There was unspeakable violence in the family usually caused by one brother - and though it wasn't voiced, it made me think other horrific things may have also happened (this is pure speculation on my part though but based on one conversation with her sister I did have to wonder).

It was only after one other brother got himself into college, did Tara begin to wonder if there might be another life out in the world for her.  This brother encouraged her and at the age of 17, Tara found herself in a classroom for the first time.  And the world unfolded in front of her.  She was able to travel the globe and meet a multitude of people and her eyes were opened to how her life might be now that she was free.

I found this to be a haunting book - one that I am still thinking about days and days later.  Definitely would recommend.  

So what about you?  Do you gravitate toward memoirs or no?  Nicole, I already know your answer! ;-)

Cleaning the Oven

 I haven't posted since JANUARY?!  Well, what can I say - without any office nonsense added to the fact I rarely leave the house these days there isn't very much to talk about.  Well, at least not anything anyone would want to hear about.

At any rate, I came here to announce that my oven is clean!

It seems like such an insignificant announcement.  But it's really not because we have never, ever in the entirety of our marriage used the self-cleaning feature on any of our ovens.  Why?  Because The Husband, also known as The Resident Nervous Nellie, once read a post about someone who used it and it ruined her oven.

So, because of this I'd put off cleaning the oven (counter-intuitive, I know) until it was so gross that I couldn't stand it.  And I'd spend hours on my knees with my head in the oven scouring.  And even at that, it never got completely clean.

When I made some muffins the other day, I noticed that the oven had once again reached an unacceptable level of grime.  And tried to drum up the fortitude and determination to get it cleaned.

And the mere thought of it exhausted me.  So, I made an executive decision and announced that I was going to use the self-cleaning feature.  The Husband was aghast.  So, I asked him if he had it in him to clean it.  The answer, of course, was no.  He once again brought up the poor woman whose oven was ruined.  And I pointed out that these features have to be safe or they wouldn't be allowed to be features and that most likely, that woman's oven was either a lemon or she did something she shouldn't have.

So I started the self-cleaning feature - I knew that the oven would get extremely hot and that there would most likely be fumes from all the gunk getting burnt off (there was) but what I did not expect was that it would take 4 hours!  Had I known that, I would have timed it better (say, after lunch.  Needless to say, our lunch that day was delayed by about two hours).

Considering how grimy that oven was, I wasn't expecting much when I opened the oven to wipe everything up after it had cooled down.  However, while it's not completely perfect the oven is almost pristine.  So much so, that every time I walk in the kitchen I take a little peek just to admire the cleanliness.  It's the little things in life, y'all.  You can bet that I will never find myself on my knees scrubbing that oven again.

Now, if I could just figure out a way to clean between the glass on the door without having to take the whole door apart.  

Book Review: The Mad Wife by Meagan Church

They called it hysteria. She called it survival.

This book is centered on Lulu Mayfield, a woman trying to mold herself into the perfect 1950s housewife.

Based on that sentence alone, we kind of know where this story is headed.  What woman can be "the" perfect housewife?

When a new neighbor, Bitsy, moves in Lulu suspects something darker lurks behind the woman's constant smile.  And perhaps it does, but maybe that's not her fault, could her husband have had something to do with the distant smile?

As the story progresses Lulu's so-called perfect facade starts to crack.  And others, including her husband are beginning to notice.  And Lulu begins to worry what her husband might do to her to "fix" her.

Hysteria was actually a common medical diagnosis for women in the 1950s and the treatments could be as simple as drugging the woman or they could involve more invasive and inhuman treatments.  A real concern for some women at the time.

This book, billed as a domestic drama, was so heart wrenching and the writing so evocative.  And I think it will resonate with a good majority of women (particularly) mothers, as we have all experienced the "expectations" of us - whether or not we give a damn about the expectations - we know they are there.  And those "expectations" back in the 1950s were far higher than they are today.

Occasionally, I am a Ditz

 Y'all...I am a logical person, a rational person, a generally sane person (oh hush, I have my moments) and a fairly intelligent person.

And then there are moments, like last week, when I am reminded that occasionally I am a ditzy person.

As most of you know, I like to do jigsaw puzzles. I generally have one going most of the time.  I buy my puzzles based on the picture - not necessarily by the brand which, as you may remember, has caused a problem on at least one occasion.  Thank goodness, that issue has reoccurred...yet.

At any rate, one day last week as I was sifting through the pieces of my puzzle my eye was caught by the letters on the back of the pieces.  This is nothing new as I've noticed letters on the back of other puzzle pieces before - but never thought much about it.  Maybe I thought they just spelled the brand of the puzzle or maybe the name of the puzzle.  I don't know.

But on that day, something "clicked" and I looked more closely at those letters.

It was only then that it dawned on me.  Those letters signfy the sections of the puzzle.  A is the top left section and so on.  Which turns out to be REALLY helpful when there are repeating themes/colors in the entire puzzle.

Why am I admitting this ditziness publicly on the internet...where it will be a testament to my sheer inability to notice what is right in front of me FOREVER?

Because, I can't be the only one.  Right?!

Tuesday is Coming

 Y'all.  I just looked at the calendar and panicked.  Not over gifts (well, except for the two that still haven't arrived) or the stocking stuffers.  That, shockingly enough is well in hand this year.  Although, as a side rant, Etsy Seller - do NOT create a shipping label on the 16th and not ship the damn package!  As of today, the item still has NOT shipped.  At this point, I'm not expecting this item to show up on time.

No, I am in a panic over the baking and candy making.  I just pulled all the frozen cookie dough out to thaw and figure I will be non-stop baking and candy making between now and Tuesday.  In addition, to cleaning like a crazy woman before Tuesday.

Why am I in a panic over getting all this done prior to Tuesday, you ask?

We can blame The Husband.  He decided, on a whim, that we should have a few of the neighbors over for drinks and appetizers on Tuesday and just informed me of this yesterday after already mentioning it to said neighbors first - but apparently, it didn't sink in for me that we were staring down the end of the week until today.

So, in addition to all the baking, candy making, cleaning, and deciding on Christmas Eve dinner dessert, I now probably need to come up with an appetizer all by Tuesday.

Which is (counts on fingers) five days from now.

I could be mad at him but really, it's my own fault.  I've been living in my head for the past few months and hadn't realized that Christmas - and all the attendant "events" - was right around the corner.

And here we are.  *sigh*

What's causing you angst or panic right about now?