Category Archives: Family

Five Months Later

February 20th my Daddy called an ambulance to take Mia to the hospital. Her flu symptoms were just too bad, and he was just too sick, to go through standard doctor or urgent care routes.

Almost exactly five months to the day later, July 18th, I’m going to be bringing Mia home for the first time.

I wrote about so much of it in the first couple of months. I don’t know how I did it, how I found the time even. But I’m so glad I did. The facts have gotten so fuzzy… the raw feelings and emotions have started to become ever so faded…

The last post I wrote about Mia and the home-health-situation was April 26th. It was the Brace Yourself: Good News is Coming, and it covered Mia waking up, talking, and being moved back to Kindred to be weened off of her ventilator.

A LOT has happened since then. The highlights:

  • Mia spent six weeks at Kindred and improved faster than we ever could have imagined: Within weeks she was completely off of her ventilator, her trach was removed, she started eating real food again, and she started medication to help her handle anxiety.
  • We were kicked out of Kindred and transferred to the WORST rehab and health center on the planet: Because Mia was on isolation when her Kindred-expiration date came, we were sent to Rockledge Health and Rehab at the last minute. It was HELL. That link is my Google review and it says it all. The craziest part is that I was with her for the move from Kindred on a Monday, then went to Jupiter to trade vehicles with Corey after work two days later on a Tuesday, which I followed-up with the Cher concert on Friday, and by Saturday I was back in Merritt Island to oversee her move out of that hellhole. No words for the exhaustion…
  • Our transfer to Health Center of Merritt Island happened, and the rehab got REAL: When Mia left Kindred on May 12th, she was juuuust starting to be able to use her hands with enough dexterity to feed herself. When she got to HCMI on the 17th, she was lifting her arms really well but couldn’t reach above or behind her head. Only one month later, on June 20th, she walked 50 feet with a walker.
  • We spent Daddy’s birthday together as a family: This was the first time all four of us had been together talking, laughing, and STANDING, in 5 years. It was an incredibly hard day for me but we were together and healthy, and that helped.
  • And since HCMI is only 5 minutes from Daddy and Mia’s house, I started a consistent schedule commuting to and from Merritt Island: For the last two months I’ve spent two or three nights a week in Merritt Island, going after work to check on the house, get mail, hang out with Mia and talk, do her laundry, and make sure things were still up and running.I would love to say this was easy-breezy, but it meant a LOT of time doing laundry, eating Publix subs, buying and exchanging clothing and shoes for Mia to wear during rehab, making questionable changes to Daddy’s cellphone plan to get Mia access to Facebook in rehab, and one special night casing the house at 10pm to find out why the waterlines had been shut down (long, long story).

And now, here we are five months since this all started, and Mia is coming home.

She can walk so very well now, still using a walker but it won’t be much time before she can ditch it. And emotionally she’s in amazing shape. We’re still grieving over Daddy, of course, but she has a very different outlook on life now and it’s wonderful.

So Friday we start a new chapter, together once again. I’m honestly terrified. I don’t know how I will be able to leave her in the house alone, not to mention let her drive! And I have no idea how she will react to being in the house with Daddy’s ashes, or how she’ll be in the house without him.

I’ll be with her the first week out of rehab – June 18th through 22nd. After that, Corey should be back up for two weeks and then Cari will be back down for one week. And then who knows?

Wish us luck!

All of us, standing together, on Daddy's birthday.

All of us, standing together, on Daddy’s birthday.

One of my favorite Daddy-Facebook-interactions

A couple of years ago, during peak political season, Daddy met Vince, Uncle Dan, Uncle Bob, and myself at Rusty’s in Port Canaveral.

(If you didn’t know, Daddy and I were on TOTAL opposite ends of the political spectrum. Our political Facebook arguments are seriously legendary and could end up 30 comments deep with multiple factcheck.org and snopes.com references.)

He didn’t know how to work his fancy smartphone but he wanted a picture of us on it, so I handed it to Vince who took the photo and then I uploaded it to Facebook for Daddy.

I captioned it for him “Me and my socialist daughter. I love her.”

And then the comments poured in and every time I look back on them, I LOL a bit, and then feel super loved.

That last comment.

That last comment.

My Daddy loved me and was proud of me. I have it in writing.

Brace Yourself: Good News is Coming

Tuesday night I walked into Mia’s hospital room around 7pm. She turned her head, saw me, and said “Oh my god. Get me a lawyer. Call Dan Newlin.”

That’s right. Mia is officially asking for a lawyer and wants to sue every doctor she’s seen and who saw Daddy.

Which means that all is right with the world and everything is going to be okay. The last two months were one big false alarm. This woman is clearly back to old self and will be fine.

Yeah, nothin’ to see here folks. Move along.

But for the sake of documentation, let’s catch-up since my last post about Mia’s health….

Her lungs and brain got better but her stomach, not so much:
The day we were supposed to be letting Mia go was the day we told her about Daddy and hanging out with her. It was April 11th and she was awake and alert, but still couldn’t speak.

She was mouthing phrases like ‘I have to go the bathroom,’ and ‘help me.’ And she was in a LOT of pain.

The stomach issues that caused Kindred to send her back to Holmes were worse. And by “worse” I mean she was hemorrhaging blood from her stomach at an alarming rate. And it was hurting her like hell.

Basically, her colon quit. Stomach issues (like Chrones) that she’d been managing for years with medication were suddenly at the forefront. And they were completely unrelated to the Flu or her breathing issues.

After days of getting 2 to 4 units of blood, her blood pressure being impossible to manage due to pain medication and rapid blood loss, and her stomach in horrific pain, we were advised to do exploratory surgery.

It was exploratory because GI couldn’t scope her due to the delicate state of her stomach. So surgery went in blind.

They ended up taking the entire right side of her colon in a hemicolectomy and having a piece of her small intestine brought outside for an ileostomy.

And now that we got a damaged half of her large intestine out of the way:
Things started to get better quick. Like, REAL quick.

Sure she has like, 20 staples up the middle of her stomach. And sure she now has a colostomy bag. But blood pressure, oxygen rate, heartrate, EVERYTHING started going in the right direction.

So she got transferred back to Kindred. (That’s the 3rd time, for those of you counting at home)

I went to see her last Friday night after work, walked in, and she SPOKE to me. Like, FOR REAL. WITH A VOICE. She was a little whacky, and some of the things she said were kinda weird, but her sentences were complete and complex.

But then her stomach started bleeding and she got sent back to Holmes.

Queue the request for a lawyer:
When I saw her at Holmes the following Tuesday, she was PISSED. And she was REALLY talking. She had so many questions – about Daddy, the puppies, her house, Corey, Cari, everyone. I told her as much as I could and spent hours massaging her to try to get her swelling down.

We had a really great night – laughing, picking on nurses, talking about everyone and everything. She was sharp as a tack and it was a blast.

The next morning she was disoriented, scared, and very frustrated. She asked me “what do I do?” and I said “Move. Move as much as possible because the sooner you get moving, the sooner you get home.”

Annnnnd back to Kindred:
After getting cleared, again, by Holmes, Mia was sent back to Kindred (4th time’s the charm? God we hope so). The situation is basically like this:

  • If she were 100% healthy and simply recovering from a hemicolectomy, she would be going home.
  • If she were 100% healthy and simply recovering from the trach and lingering lung weakness, she would be going to Kindred for a short time and heading home soon.
  • But because her muscles have atrophied from nearly 9 weeks in bed, she has to go to Kindred and to rehab for a long, long time. Home is not in the immediate future. We’re not sure if it will ever be in her future.

That was last night, and she was so upset. She was convinced Kindred was trying to kill her and a ‘dangerous’ place. But I can’t say I’ve seen anything to support that. I mean, I’ve met and spoke with THREE of her doctors there on a freakin’ Saturday. At Holmes and Cape Canaveral, I was lucky if I ever saw one, let alone got more than 2 seconds of his/her time.

I figured when I walked in tonight she would be pissed, and I was kind of glad she couldn’t move because I figured she would be throwing things at me when I walked in for having her sent back to Kindred.

But nope. 
Nope nope nope.

We had another great night. We talked, we laughed, we flipped through memories. She’s having a hard time understanding time and how long she’s been out, how long since Daddy died, and how much has happened to her. (At this point I am too and I’m not the one who’s been drugged and worked on for two months).

But otherwise… she’s not only is alert and responsive, she’s not only verbalizing complete and complex thoughts, she even SOUNDS like herself now.

And she got started in Physical Therapy today, which looks promising. She’s responding the right way – her brain is telling the right muscles to move… her muscles have just atrophied so much that it’s going to be a lot of work to recover them.

As for me:
The last week has been tough but much, much better. The dogs are boarded so I’m really just navigating my schedule to be here for Mia four days a week but still only spend two nights away from home.

Otherwise, I pretty much can’t wait to get back to her tomorrow, and the next day. And Tuesday night. And Wednesday morning. Because when we’re together I feel like everything is going to be okay.

Daddy's Playboy Cards

The things that have made me laugh recently

If you’ve thought the last almost-eight weeks have been nothing but depression and sob-fests over in Ali-land, you would not be far off. This has been a seriously bleak time.

But despite losing Daddy and being thrown into a logistical nightmare that includes commuting from Merritt Island to Orlando and Melbourne, seeing Mia ride a roller coaster of healthcare, and picking up more dog shit than I ever wanted to see in my entire life, there have been a few really bright spots in all of this.

And so, to change the tone on this site for just a brief moment, (and I do mean brief), I’d like to tell you about some things that have made me laugh…

    • When we thought we were going to lose Mia only a week and a half after Daddy, I stood in her room brushing my hair and I was almost knocked over by feeling my Dad’s voice in my heart saying “This woman can’t even give me two weeks of peace in the afterlife?!”
    • When we saw Mia in ICU and she was finally able to respond, I pulled out Daddy’s iPad and asked her who she was posing with in a photo from 2010. It looks like some random band dude and we couldn’t place him. She didn’t answer WHO he was. But when I said “He looks like he parties… does he party?” Her eyes got wide, she nodded big, and mouthed “OH YEAH!”
    • I knew Mia and Daddy were gun enthusiasts and we had a good idea that they were “preppin’.” But none of us knew the spare guest room had been converted into a full-blown bunker and that there were guns and knives stashed in nearly every available surface. When we found our 6th handgun in a box at the top of the closet labeled “Photos and Important Documents,” we had to laugh.
    • Daddy installed a wall safe in the house. We had to look EVERYWHERE for it – under every photo, behind every piece of furniture – and the only reason we even knew it existed was because we found the instructions to install on the surface of the “bunker.”  It was behind a pretty big picture and when we took it off, it’s clear Daddy missed the studs in the wall at least twice before finally getting the right spot. Oh to imagine his frustration with that… 🙂
    • Cari went to see Mia a few nights ago to say goodbye before heading back up to North Florida. I forget what Cari said to her, but I’m sure it was something sweet like “make sure you get good rest for me,” or “I need you to calm down so you can get better.” Mia mouthed, quite clearly, “Shut the fuck up.” hahahaha!!! (She mouthed “I love you” later to make up for it, but it was still hysterical.)
    • We found the original drafts of their wills that clearly state “it is recommended that wills be drafted for each spouse at the same time, with all children in mind, to prevent sudden onset of Wicked Step Parent Syndrome.” LOLWUT?!
  • I’m starting to plan Daddy’s memorial and thinking of stating, “in lieu of flowers, please make donations in his name to the National Rifle Association or The Republican National Committee. C’mon, you know it’s what he would have wanted.” No, seriously…
  • And finally, we found Daddy’s Playboy Club and Casino membership cards, with little bunny stamps marking each month he went to the club, from the years 1975 through 1982 – yeah like, eight freakin’ YEARS! And I was born in 1982!! Daddy!!
Daddy's Playboy Cards

Seriously Daddy?

And oddly enough, there’s been a lot more. Cari and Corey, Vince and Cliff, my Uncles, even (and especially) my co-workers; everyone has kept me laughing. Sometimes that laughter turns into tears, sometimes tears turn into laughter.

But there’s not too many memories I have of Daddy that don’t end up making me smile.

The roller coaster is moving faster than I can blog

Yeah. This roller coast is moving far, far too fast for me to keep up with on this blog.

What roller coaster, you ask?

The one my family got on when Daddy and Mia got sick. You know, the one that keeps going up and down and twisting and changing directions faster than I can process. The one that is my life and emotional state of being right now. That one.

So where was I?

Oh yes. We’d been told it was time to let Mia go, and we were preparing to do just that. Here’s how that roller coaster went…

Hurtling Downward: Making the Decision
First, let me start off with the emotional hell one experiences when facing that decision. It is, without question, the worst decision you can ever imagine. Add to it the fact that the life in question belongs to a woman who is only 59 years old, your only remaining parental figure, and she can look you in the eye and recognize you when you’re in the room with her.

Her doctors explained that she was suffering and the continued effort to keep her going was well outside of her medical directive and wishes. But what do you do? She’s alert, for gods sake.

Do you ASK her if she wants to be taken off of life support? I compared that to being asked if I wanted to get into a car that I knew would end in a firey crash – my answer, what I expected hers to be should we have asked, would be giant “HELL NO.”

And so the next thought is, well… okay… if she says “no” she doesn’t want her plug pulled… do we tell her what her life is going to be like? Do we drop the Daddy-bomb? Do we tell her that she will never walk again? Do we explain that laying in this bed, with this trach, is likely as good as it gets? And after we do that, how much time do we give her to change her mind from “no” to “yes?”

Which leads to the logical conclusion of DO NOT TELL HER. Just gather around, explain about Daddy, and tell her we’ll always be there and we love her and everything is okay… and let her go.

And so that’s what we planned to do on Friday, April 11th.

Corkscrew Twists and Turns: Scrambling for Finances
The second worst part of letting someone go is worrying about how you’ll “take care of them.” I think we all know what that means so I’ll skip the details.

We were able to take care of Daddy because we had Power of Attorney for Mia and all of their bank accounts were shared so there was plenty of money available for us. But when Mia goes, all access to all accounts will be shut off and everything will go into Probate.  We already have a probate attorney from losing Daddy, but the process still takes anywhere from 6months to a year.

Not to mention, Mia had all of Daddy’s life insurance funds coming in and both Cari and I needed access to those funds to ensure everything keeps running at the house.

So in a seriously epic two day period, Cari, Corey, and I coordinated a state-wide effort to shuffle hundreds of thousands of dollars from Mia’s accounts into a new, shared one for us so that should anything happen to her, we would be able to take care of her, the dogs, and the house while everything else went through probate.

I’ll blog about “Advice to People with Children or Parents or Pets or Assets or ANY Loved Ones At All” later, but for purposes of this conversation just know that we HAD to wait until after 9am on April 11th to let Mia go to ensure we would have the funds available to take care of her.

Climbing Back Up: A Miracle? 
The doctors called Cari on Sunday, April 6th and encouraged her not to wait until April 11th. They said Mia was suffering, her body was breaking down, and the waiting was unfair to her. Now, he said all of this VERY nicely, but he was being honest and giving us his honest opinion.

Well, letting her go on April 6th wasn’t an option. We had to wait til the 11th.

So on the 8th, Cari and Cliff headed down to Melbourne from Pensacola, and on their way they got a call…. not that Mia had died before we could get finances under control, or that she’d gotten even worse. Oh no. This roller coaster was heading up – the call was that Mia was doing REALLY WELL.

Cari, Corey, and Cliff went to see Mia that night and it was like a miracle had happened – she was mouthing complete sentences (something she should have been able to do weeks ago), she was moving, she was more alert than she’s ever been and she was answering EVERY question they asked her.

Considering the best night she’d had to-date was answering 4 questions in a 3 hour period, that was seriously effing miraculous.

I went to see her Thursday with the other three kids, on the 9th, and it was like someone had suddenly woken Mia up. It was UN EFFING REAL. Her eyes are wide, you can tell she is TOTALLY, 100% “in there,” and she is responding to everything.

Hanging On Tight: Planning for a New Direction
Now we’re back into planning Mia’s long-term health care. So is the hospital, actually.

She’s being weened off of the ventilator as we speak, and there are all sorts of tests on the horizon to figure out why she still can’t move. It could be muscular, it could be nervous system, we don’t know but we need to find out.

But most of all we are taking things one HOUR at a time, planning for every possible scenario, and holding on to anything stable as tightly as possible.

More on Mia

Once again there are too many details about Mia’s health to share in one, or even five, Facebook status’s. And so I turn to my blog to share the news.

Where I left off:
Mia was safely moved from Cape Canaveral Hospital to Kindred in Melbourne.

Things were rough when Mia first arrived at Kindred. Cari was in town to oversee the move but had to head back to North Florida the next day and though she was the first of us to see Mia in Kindred, her last visit wasn’t great. The move took a toll on Mia and what little responsiveness had been gained during the last two days in Merritt Island were soon gone.

That’s when I started my 11 day shift at Daddy and Mia’s house.

There are many reasons why we want at least one of us to be near her, but the reason someone has to be in the house morning, noon, and night is simple: Elmo and Cooper, 14yr old dachshunds, brothers from the same litter, who are just as devastated by the change in our household as we are.

And so Mia moved to Kindred, I moved to Merritt Island to take care of the dogs, and Cari and Corey went home.

Improving at Kindred:
My first weekend at the house was super lonely so I ended up hanging out with Mia at Kindred pretty much all day. I did her hair, massaged her, got her iPod a little speaker set and turned up the music that she’s so known for loving.

And slowly she started to get more and more alert. But she was also having a LOT of stomach issues.

This is when I realized how incredibly critical it is for your body to “evacuate.” Her colon shut down and the pressure of a very full stomach (being fed through a feeding tube) was causing her to take shallow breaths due to pressure on her diaphragm as well as for the lower part of her body to get poor circulation. The reason I massaged her so much was because her feet were starting to turn blue on the bottom. Things were looking kinda rough.

Kindred  did her right though. They stopped the food through her feeding tube, started IV supplements, and again she started to become more alert.

Monday, March 24th was a good day for her. Maybe even her best day.

Her stomach issues had worked themselves out, her hair looked good, her circulation started again so her feet were nice and warm and pink. She still couldn’t move her hands or legs, but she was pressing down with her shoulders and moving her upper arms. She had her music, and we talked.

I asked her if she was scared. She nodded.

I asked her if she was mad at us for putting her through this. She shook her head no.

I asked if she wanted me to leave. She shook her head no.

I asked if she wanted me to shut up. She didn’t reply. 🙂

When she nodded ‘yes’ to being scared, I said “okay I can fix that. I’m going to tell you everything that’s going on with you!” I’d noticed her straining to hear what every nurse and doctor was saying while in her room so I started from the beginning.

The only thing I left out was Daddy. I never, ever mentioned Daddy. And Monday the 24th was a great, GREAT, day.

March 25th – Panic at Kindred:
I practically floated into Kindred the next night after work; I was just SO excited to go see Mia.

But when I got there and she saw me, she started trying to talk to me. I asked her if that’s what she was trying to do and she said yes. Her blood pressure shot up to 188/100, her heartrate hit 100, and her breaths per minute (which the machine had set to 18) were hitting 50. She was breathing so hard that she was pushing air around her trach. I truly believe she was trying to ask me about Daddy, and again I danced around discussing him. The result? She completely panicked.

It was awful.

She was freaking out so badly that they couldn’t get her sedated fast enough. I asked her again if she wanted me to leave and she shook her head ‘no’ but the nurses eventually asked me to do just that.

And so I didn’t see Mia Wednesday or Thursday. I waited until my birthday, Friday 3/28, to go back and that time I went with Vince.

March 28th – Kindred can do no more, and a move to Holmes:
I stopped by Kindred on my birthday it was supposed to be a ‘pop-in, pop-out’ visit. We just wanted to say hi and not cause her to panic.

Instead we saw her before she was moved to Holmes Regional because Kindred said she was simply too critical for them. She’d had a bad morning, her blood pressure bottomed out, her cO2 levels hit 74 (a normal level is in the mid-30’s) and she had to be sedated and paralyzed to keep from having intense panic attacks and anxiety.

The day after my birthday, my second full weekend in Merritt Island, I went to Holmes to see her and she was right back to square one.

The ICU at Holmes is *great* – but Mia had no idea I was there. She responded to some sounds, but all the progress we made was gone.

MRI’s, EEG’s, and the call we didn’t want to take:
Mia has a great staff at Holmes and they were just as curious at her inability to move, nod, track with her eyes, or respond with any consistency as we were. And so they scheduled an EEG and MRI.

In the meantime, she went back on her feeding tube and started bleeding in her GI system.

And Thursday Cari and I took a call from the neurologist who combed through her results… and it was the second worst phone call I have taken.

Basically the facts are these:

  • There is no clear area of brain damage but there is evidence of diffused brain damage, spread throughout – that is likely due to a lack of adequate oxygenation.
  • If her brain were the only issue it’s possible she could recover over a 6 to 8 month period but even then it is unlikely she will ever be able to walk and she will have to re-learn everything.
  • But her brain isn’t the only issue. Her lungs are not improving and her GI system is bleeding.
  • This means that not only is there a lack of adequate oxygen getting into her blood, but since she’s bleeding out there is a lack of blood getting to her brain.
  • She’s on the best antibiotics known to man and she still isn’t showing signs of improvement.
  • Her body is simply not supporting her brain any more.

And so today we were told to think about what we wanted to do… and when we’re ready, if we’re ready, we will request we move to Mia into what’s called “Comfort Care.” They will make her comfortable, make sure she’s not in any pain, we can talk to her, be with her, tell her about Daddy and say goodbye for the last time, and let her go.

It might take hours, it might take days. But we can, and likely will, ultimately make the decision to stop putting Mia through this struggle only to bring her into a brain and body that will never be what it was, and only continues to get worse.

Though we expected this, hearing it all was still so… shocking… heavy… intense… horrible.

I can’t speak for Cari and Corey, but as for me:
The only way I’m getting through this right now is by reminding myself that it’s not about the life we will be taking away from Mia, but the suffering and indignity we will be sparing her. She won’t have to communicate with only her eyelids for years on end. She won’t have to eat and breathe through a tube. She won’t be bedridden and get sores or painful infections. She won’t be trapped in a body that’s failing her. She won’t survive, but we won’t be taking away her life.

This whole time I thought my Dad was getting cheated from the grieving he fully deserves because I was so focused on Mia. But now I feel like she’ll be cheated because I am so numb from Daddy.

And that’s that.

Until next week.

My last birthday card from Daddy

Today is my birthday. It’s the first one where I won’t get a call from my Dad. I should have already gotten a card because he liked to send them early.  He was never one for writing his raw thoughts (like me), but he did know how to pick out a card. This is the last birthday card I got from Daddy:

————–

My Daughter

If I could gather up
all the smiles, laughs,
memories, and pride
that you’ve brought me
through the years
and give them back to you,
I would.

Maybe that way you’d understand just what it means
to have a daughter like you
and why you’re one
of the most important things
in the world to me.

Alicia,
No one could ever
love a daughter
and believe in her more deeply
than I love and believe in you.

Happy Birthday
Love,
Daddy & Mia

—————

I miss you, Daddy. I miss you every second and with every breath. I love you. You’re my Daddy and my best friend and my favorite person. Always and always and always and forever.

A Lengthy, Detailed Update on Mia

Since so many people have asked and the details are so vast, I thought I’d write out a full-length update on Mia’s health in chronological order. This is long, but it’s thorough and pretty interesting if you’re interested in that sort of thing…

The Beginning: The Flu and Ventilator
Mia got Type A Flu around February 16th. She was admitted to ICU on February 19th and she was incubated/put on a ventilator to assist with her breathing after not responding well to the by-pap machine on February 22nd.

(And by “not responding well to the by-pap” I mean “taking her mask off and throwing it at the nurse because she was agitated and hated it.” That’s our Mia. :))

Now, you and I get about 21% oxygen from the atmosphere. The pressure that our lungs and diaphragm extends to bring that air in is roughly 5 “Peep.”

Mia spent 19 days with a tube down her throat and most of that time was spent with a ventilator delivering 100% oxygen to her lungs at 15 peep – the highest settings the machine has.

She was breathing short, shallow breaths against the machine, so her lungs weren’t absorbing the oxygen as well as they should have and she was also out of synch with the ventilator. It was pushing a breath in while she was pushing out. The ventilator was supposed to help her rest, do the work for her, and allow her to fight off the flu and pneumonia… but she subconsciously fought it every step of the way.

The Middle: Pneumonia and Sedation
Because she was fighting against the machine so hard, and to help her chill out enough to allow the ventilator to do the work for her so she could fight the infection, Mia was heavily sedated from the get-go. This is why she didn’t know about Daddy… it’s probable she still doesn’t really know… we haven’t gone out of our way to bring it back up.

When she was on the by-pap, they gave her Morphine and Advan. When she was put on the Ventilator, it was Propofol (the drug that killed MJ). Then, when her breathing was so out of synch with the vent, they put her on a paralytic to completely paralyze her body so no muscle could fight against the machine – nothing, nada, not one movement.

Now, when you’re taken off of Propofol, you usually wake up pretty instantly. Mia… didn’t. Her eyes opened, she stared straight ahead, but she didn’t move. It looked like the lights were on (barely), and no one was home.

Those times she was taken off of all sedation were called “Sedation Vacations” (yes, I asked if I could get one, only the inverse… I was denied) and it was during one of those breaks that we told her about Daddy.

That was Wednesday night, March 5th.

At that point her doctor told us she wouldn’t survive a tracheotomy, that none of her metrics were moving in any direction let alone the right one, and that her major systems (like, kidneys) were starting to slowly fail.

Looking back, if we were going to ‘pull the plug,’ then that would have been the night to do it. Her doctor said that if she made it through the weekend with no movement in the right direction, then Monday, March 10th, we would discuss making that decision.

The Turn-around: Clearing Up and Getting a Trach
I swear that night I felt Daddy ask, jokingly of course, “This woman can’t even give me two weeks of peace in the after-life?”

And damn if she didn’t start turning around for the better on Thursday, March 6th.

The ventilator’s oxygen output was dropped to 70%…. then 60%…. then 50%. Then her peep level started getting adjusted down… her cultures came back that she was negative for the Flu, her kidneys picked back up, and she started maintaining her own heart-rate and blood pressure again.

On Wednesday, March 12th she was cleared for, and received, a tracheotomy.

For the first time in almost 20 days we were able to take her completely off of all sedation and see her entire face. And because she has a trach, there’s a line in her chest where nurses can pull out the gunk that you and I would normally cough up after a bad bought of pneumonia. Gross but awesome. Finally, she was heading in the right direction.

The Lights Are On…
The first two days after the trach, there wasn’t a whole lot going on in there. Again, we feared ‘lights are on and nobody’s home.’ Corey and I had such high hopes seeing her after surgery and while we saw tiny little flashes of possible recognition in her eyes… for the most part, nothing.

At that point her nurses were wondering, along with us, if she’d had a stroke… if she’d been deprived of oxygen too long (there was a point when the machine was working as hard as it could and her body just wasn’t responding),… had brain damage occured from possible oxygen deprivation… or had she just been on Propofol so long that it was stored in her fatty tissues and it will take weeks to work itself out….?

Basically, we were wondering if we’d made the right decision by keeping her alive via machines. We wondered what kind of body we were bringing Mia back to. We were afraid we went against her wishes. But the simple fact is, we won’t know the answers to any of those questions for a very, very long time. We went with the doctor’s advice and did the best we could.

Friday, March 14th – exactly one month since I’d last seen Mia and Daddy both totally normal, laughing, fun-loving as always – I left work and went straight to the hospital. I sat down next to her bed and bawled my effing eyes out. The only person who needed Daddy more than I did is this woman… she’s the only person who can understand the hole left in my heart and my life by his death… and she’s completely out of it.

Kiiiiiiiiiiiiiiiind-of….

I lifted my head off of her bed when her nurse came in and said “Oh hey! She nodded for me today! And shook her head! And she’s tracking with her eyes – watch, I’ll call her name from this side of the room and she’ll look over!”

And sure enough, she called Mia’s name, and Mia looked over. Then Mia looked at me and I saw it in her eyes – she recognized me. She opened and closed her mouth like she wanted to talk to me. And I started laughing and crying at the same time.

Saturday, March 15th to Today and Kindred
So last Friday, Mia looked at me and recognized me.

Last Saturday Cari and I showed up at the hospital and she was turning her head, blinking for us, responding to requests to open and close her mouth… she also accidentally squeezed my hand when she had a bad coughing fit, and even moved her legs a little.

I’m writing this on Wednesday, March 19th, one whole month after Mia came down with Type A Flu, and she is being moved from the Cape Canaveral Hospital’s ICU to a longer-term care hospital in Melbourne, FL that specializes in weaning patients off of ventilators, called Kindred.

She’s made a LOT of progress considering how ill she was, but to be clear: She still cannot speak or form words with her mouth for us to lip-read  – but she can respond to simple requests with a nod, head shake, or blink. She still has not moved a muscle, gripped a hand, or otherwise responded physically to any command – but she can move her muscles when coughing.

The Longterm Outlook
It’s a miracle that Mia is alive right now, but she has an enormous road ahead of her to recover. There is still no telling if she CAN recover. All we know right now are that the signs are promising, and she is making small improvements each day.

But to be clear, her future is very uncertain. She may never be able to relearn motor skills enough to live on her own again… she may never go home. But she also might surprise the hell out of us and be back in her house in six months. We just don’t know.

After her time at Kindred she will need to go to a longer-term rehab facility. We’re not sure if we’re going to be sending her to one in Pensacola to be nearer Cari, my stepsister and her daughter who has Power of Attorney, or if we will need to keep her nearby Merritt Island. That will all depend on how well she is to travel… we kinda hope she’ll be able to tell us if she even *wants* to travel.

As for the kids…
In the meantime, Cari, Corey, and I are splitting up the weeks at the house to take care of our parents very old dogs who are just as shocked as we are. Depending on how long Mia will be in rehab, we will need to find a foster home for them, which breaks our hearts and is a decision we’re putting off as long as possible.

We’ve taken care of Daddy’s will, honored his wishes to be cremated, and started the process to have him interred at the Florida Veteran’s Cemetery. We’ve gotten a probate attorney to help us sort through everything and we’ve started going back to work. Next, I’m going to start planning a memorial service for him and give folks enough notice to come from around the state.

I’m going back and forth between good-Daddy-days and bad-Daddy-days… which I’m sure I’ll continue to write about as I process. But what really breaks my heart is that, by the time Mia can really understand that Daddy died, my grieving process will be very far ahead of hers. I know what kind of pain and heartbreak she has in store. And whatever her recovery process may be… that heartbreak is awful, and I would give anything to save her from experiencing it too.

Mia and Daddy

Mia and Daddy

Life so far…

It’s been two weeks since I spoke to my Daddy. The good news is that I don’t have to say it’s been that long since I heard his voice because I found some old voicemails saved on my phone. I have one where he says “I love you” at the end… I’ve probably played it a hundred times since I found it.

The bad news is that two weeks is about the longest we’ve gone without speaking so I am fast approaching a new milestone…. and every week thereafter will be a new milestone: The longest I’ve ever gone without talking to my Dad.

I know I can’t obsess over those things. I know it’s not healthy. But the thoughts are there and they sneak up and the next thing I know I’m sobbing uncontrollably.

So if you’re wondering how I’m doing, this is it. I guess I’m doing as well as can be expected? Tomorrow I go back to work. I wonder how that will go.

Anyway – here’s what’s happened since my vLog on Daddy.

    1. Mia got much, much worse but she is slowly starting to improve. She got so bad that we told her about Daddy while she was on a break from her sedation. I think she heard us. I think she was looking at me. I think I saw tears coming out of her eyes. But otherwise, she is completely unresponsive. She doesn’t blink on command or squeeze a hand. She stares into space and sometimes furrows her brow. That’s it so far. We don’t know why. Maybe she was deprived of oxygen too long because of her lungs? Maybe she had a stroke we don’t know about? Maybe she got so sick that she’s no longer “there”…? We just don’t know and we won’t know until she can come off of the ventilator which is still many weeks away.
    1. I took care of my Daddy. When we realized Mia was not only *not* coming out of it anytime soon, but *couldn’t* come out of it, I went ahead and took care of my Daddy. I had him cremated in the suit he wore to my wedding, with the blue shirt and tie I made him buy. Vince found the receipt for that suit later and we cannot believe how much he spent… God he loved me… he did look good in it though. In the suit pocket we found a blank wedding adlib card. I guess he took it home to fill out and didn’t get around to it. I had that cremated with him as well.
    1. We got an attorney. In one of our parent’s safes we found a card for their lawyer in the state of Maine, where they lived for 5 years. That guy, nice though he was, refused to tell me any details of my Dad’s will. So we got a probate attorney in Brevard County and I am officially petitioning to become substitute personal representative of my Dad’s estate in Mia’s place, since she is unable to perform those duties. This means I will be in control of Daddy’s assets and how they are dispersed. My stepsister, Cari, now has Power of Attorney over Mia’s finances, so she will be in control of her mother’s assets and how they are dispersed. Essentially, we are stepping into the role of our parents to keep the bills paid and, most importantly, pull together as much money as possible since we have a feeling Mia’s health is going to require expensive, longterm care.
    1. I got sick and had some next-level-shit panic attacks. Last Sunday, while watching the Oscars, I had a full on break down the likes of which I have never had. (Okay not true. It was exactly like the one I had while my Daddy died over the phone the previous Sunday). The next morning I woke up sick and was petrified that I had the flu. After all, I’ve been traipsing in and out of the hospital where Mia picked it up. So I went to the doctor and it turns out my body was just so exhausted that I got a cold, had elevated blood pressure and heartrate, and was just run the fuck down. I got a prescription to Kolonopin and besides from snapping at a few people a few times and crying a lot, I haven’t lost my shit completely.
    1. I picked Daddy up. He was ready yesterday, Saturday. Cari and I went to the funeral home to pay for him and I didn’t expect him to be ready but he was. I wasn’t ready to get him… to have signed off on cremating my Dad is one thing but to pick up a small box that’s all that remains of the big man I danced with at my wedding less than a year ago? Noooooo way. So Cari and I went back to our parent’s house and got Vince and Corey, and then we went and picked up Daddy. He’s not as small of a box as I thought he would be. He’s a good 5lbs, if not more. And he’s at home until his place at the Florida Veterans Cemetery is ready.

I would say “that’s it” but there’s been sooooo much… and I remember so very little of it all. All I know is that we have been incredibly productive the last two weeks. I hope I’m making my Daddy proud. I miss him every damn second. I know if I could just call him he would know exactly what I should do with all this shit.

But my siblings and I are coming together. Cari and Corey and I have all but dropped the “step” from our explanations to people. At this point, after going through something like this, we are brother and sister.

So I’ll close this as I close nearly every thought lately…. “I love my Daddy.”

dancing-with-daddy

Daddy. A vLog.

No written words can convey what I’m feeling and I had to get this out… not only for myself but to keep from having to tell it over and over again. So, I did my first vLog.

Warning: It’s long. I cry. If you love me, you might cry too. I’m sorry… I hate this so much…

http://youtu.be/ipFYXpbK2o4

If you’re looking for something different, go check out this post I wrote about my Daddy last Father’s Day: I Love My Daddy. There will be more good ones as I process. In fact, this blog might become dedicated to my Daddy with as much love as I have for him, and I have to share.

I love him so much… thanks for watching.

xo,

– A