Thomas Julian Chipley

Elizabeth Sohn The Saucy Dish Carter Ann

May 30 at 3:20 PM

Just left him at the gallery.

He seemed just fine.

Lucid, and making perfect sense.

May 30 at 3:40 PM

Thanks.

We may be getting close to the time we tell him he has to come live with me. Threatening him with that may be enough to get him to realize he needs to take this seriously.

🌸 Carter

Daddy then sent this to me…

Tom Chipley <pennink7@gmail.com>

Elizabeth Sohn wordzenpix Kirby G. Nelson wiwoart@gmail.com Pat Watkins and 2 more...

May 30 at 8:26 AM

This is the text of the message. Make any sense to you? Someone's joke? I was emailing with two friends in Asheville about small cars.

So sorry der Ameracanasti ast. Bedtime becacaniasr... sorry for failinge failinig. You are a dear sweet lady yerdu. Bedtimje... mystical oiu. Wars ain't aint shapm from boultytryrs. Fiorm wara flow nowess newnwesess/...

Yours... mine.... fatherness... lovernennesessa. All madness dear lady... all tortdardy mannesse sseness..... Scooterneess collects on the dermid walls. Miss you dear lady.

Elizabeth Sohn wordzenpix Kirby G. Nelson wiwoart@gmail.com Pat Watkins Jaquelin Spong

Tom Chipley

May 30 at 11:06 AM

Did you write the text below?

🌸 Carter

Tom Chipley <pennink7@gmail.com>

May 30 at 6:35 PM

No. Have not the foggiest idea where that came from, but it sure was causing some trouble.

Show original message

Aunt Sister and I begin to compile notes and see if we can figure out what’s going on.

May 31 at 10:01 AM

Sent this to Jackie, too.....

Sent from my iPad

Begin forwarded message:

From: Elizabeth Sohn <bsistersohn@aol.com>
Date: May 31, 2016 at 9:55:55 AM EDT
To: Tom Chipley <pennink7@gmail.com>
Subject: Tomorrow

And who will be going with you tomorrow to dr with copies of your suspicious emails and take notes? Do you have the exact date your medication was increased? And does it rhyme with your infamous emails? And will you ask about a sleep test to possibly diagnose the need for a pig nose? I must now go spend all my money on pet food and vodka. I am not afraid to share your answers and my questions with EVERYBODY. Love, little sister

May 31 at 10:11 AM

Good. Do we know if it's Dr Cary or Dr Heart?

🌸 Carter

May 31 at 10:54 AM

It's my understanding that it's Dr. Cary ....if I see anything different in his emails, I'll let you know.

Elizabeth Sohn The Saucy Dish Carter Ann

May 31 at 8:20 AM

Here. TC says he did not sleep well but he is otherwise ok. Will call the doc today.

Showed him the email in his outbox, he is mystified. It was sent 2 hrs after a perfectly lucid note.

Is possible he is sleep-typing? Or the victim of autocorrect gone wild? Or he clicked on a "translate to Czech"button on accident?

All I can say is that he seems like his old self ,just fatigued.

Are there more really weird emails?

Maybe I invite self for dinner keep watch a bit longer, although as mentioned he does not always love my uninterrupted companionship. Go figure.

May 31 at 9:04 AM

Let's see what the Drs say today. And I'm interested in the lunch date with the boys today too.

Explain to him that we're going to keep an eye on him and we will take actions to help when/if need be. We're not going to let him hurt himself, but we're also going to give him all the space and freedom he can safely handle.

🌸 Carter

May 31 at 9:23 AM

Well said, little baby grown up niece. .....

Sent from my iPad

May 31 at 9:56 AM

He has dr appt tomorrow at about 2 pm.

May 31 at 10:11 AM

With heart Dr or Dr Cary?

🌸 Carter

May 31 at 10:21 AM

The one who oversees all his meds. The one he doesn't love.

In Manassas. I believe he's the one that changed his dosage.

La Conte?

Aunt Sister

May 31 at 10:48 AM

Unfortunately that doesn't clear things up...

The one who oversees everything is Dr Cary who is out here in Manassas, and as far as I know Daddy does love him and that's why he still comes all the way out here. He's been our family Dr for 20+ years. Damn... Possibly 30+...

It's my understanding that the one who changed the medication that possibly sparked all of the weirdness is the heart Dr who is local to y'all there in the valley.

🌸 Carter

May 31 at 2:13 PM

Ok. Right it's dr cary

**In between emails, we received a call from Jackie telling Aunt Sister they needed to go to the ER.**

Aunt Sister

May 31 at 3:17 PM

Shit ... forgot to tell you ... he's in the Shenandoah Memorial Hospital ER.

Dr Cary thinks he may have had another heart attack or a stroke, but without seeing him, he suggested he go to the ER to have all of those tests done there.

still waiting for her to call. She may have been told by him to NOT call and to not worry us, so she may be between a rock and a hard place.

*Carter*

Aunt Sister

May 31 at 3:15 PM

1st hospital I tried, and I spoke with the woman who was/is treating him. I asked her to have Jackie call me, so that's why I'm not calling you right now, I'm waiting to hear from J. I'll keep you posted. Once I learn something I'll call Kate too. I'm on record at Dr. Cary's office as someone who they can talk to about his health, so the team there was very nice and said they would call me as soon as they heard anything from the hospital. I also called my sweet blue-eyed Honey and told him he may need to come home. Of course shit only happens when he's at work.

*Carter*

Carter Ann McClelland

May 31 at 3:24 PM

Good work, so where is he? I called John who thought it might be good at this point to get Kate involved or she'd be really pissed and there's nothing she has to do right now....so I did, but got voice mail. God, I'd forgotten the secret medical rules of who can or cannot get info. Keep me posted.

Sent from my iPad

May 31 at 4:00 PM

Jackie just called. Said they're moving along quickly with the tests. She still doesn't feel there is anything wrong and doesn't think he'll be admitted. But she will call me if any of that changes.

🌸 Carter

May 31 at 4:11 PM

Yeah, just got a call from Jackie but her phone must have run out of battery power. Are you ok with being the one people touch base with? Heard from Mark, too, and he said he'd heard from you already. Time to feed the zoo.....thanks and love...me

Sent from my iPad

May 31 at 4:27 PM

Yes I'm fine being the go-to-between, reporter, fact-checker, researcher, advisor, police...

🌸 Carter

Mark Pierce

May 31 at 3:44 PM

Hi.

Yes. He called Dr. Cary and was told to go to the ER right away. So Jackie took him to SMH and they're there now.

Here's the latest from her...

"Doc Cary wanted him checked out right away so we are here at Shen mem. But he seems fine, totally coherent, etc.

They are doing blood work, ct scan etc so if anything out of whack (or outer of whacker) we will know shortly.

He has the staff in stitches as usual."

Once I hear something else, I'll let you know.

Thank you!!

🌸 Carter

Mark Pierce <mrpierce5626@gmail.com>

May 31 at 3:49 PM

Thank you! That sounds encouraging!

wordzenpix . Carter Ann McClelland

Mark Pierce

John Chipley Tom Chipley wordzenpix . James Watkins Elizabeth Sohn and 7 more...

May 31 at 4:06 PM

Hi everyone.

I'm sure Daddy will fill everyone in on the details soon, but just as a quick update, he did call Dr Cary who suggested he get some tests done sooner rather than later, so they're running some tests now.

Jackie just called. Said they're moving along quickly with the tests. She doesn't feel there is anything going on that will require him to be admitted, and says he's his old self and charming the medical staff. But she will call me if any of that changes.

🌸 Carter

John Chipley <johnchipley@yahoo.com>

Kate Scattergood Elizabeth Sohn James Watkins megrose714@yahoo.com Tom Chipleyand 6 more...

May 31 at 4:13 PM

Yes, thanks for keeping us posted. Be sure and tell Tom that I will pray for him. I just won't tell him what I am praying for.....

bro.john

The Saucy Dish Carter Ann

May 31 at 4:53 PM

Ct scan results aok.

On Tuesday, May 31, 2016, Elizabeth Sohn <bsistersohn@aol.com> wrote:

I'm surprised that he went to the hospital instead of lunch with the boys. Spongo, I kinda give you credit for that, many thanks. We never plan these days, they just burst open the door and make themselves at home. Carter, got any idea where Kate is now??? Maybe moving Shelby home or something? Please let me know if you hear from her. Keep in touch, team! love....me

Sent from my iPad

On May 31, 2016, at 3:15 PM, Jaquelin Spong <ipsolutions2@gmail.com> wrote:

Doc Cary wanted him checked out right away so we are here at Shen mem. But he seems fine, totally coherent, etc.

They are doing blood work, ct scan etc so if anything out of whack (or outer of whacker) we will know shortly.

He has the staff in stitches as usual.

On Tuesday, May 31, 2016, Elizabeth Sohn <bsistersohn@aol.com> wrote:

Ok, Spongo, what's happening? (What a great name for a cat). Are you guys at the hospital? What do you know right now? Do they know if they remove his bandanna his head will fall off? Will he be admitted?

Sent from my iPad

Elizabeth Sohn Kate

May 31 at 5:24 PM

So that means his brain is good? No stroke? No early Alzheimer's?

What did the EKG say? How's the blood?

🌸 Carter

May 31 at 5:53 PM

Right all vital signs good. Awaiting blood results

On Tuesday, May 31, 2016, Carter McClelland <daizymeigh@yahoo.com> wrote:

Jaquelin Spong Kate

May 31 at 6:52 PM

Oh dear lord, does that mean he'll be perfectly fine but even more nutsy the rest of our lives????? a pound more of thanks to Jackie. when will he be home?

Sent from my iPad

Elizabeth Sohn The Saucy Dish Carter Ann John Chipley

May 31 at 7:00 PM

On the way home now, via Wendy's. Blood results all good, slightly elevated liver enzymes.

Everything else good/normal/relatively speaking, of course.

Elizabeth Sohn John Chipley Kate Scattergood

May 31 at 7:48 PM

Yay!! Good news.

I was just wondering if his drinking had anything to do with his recent strangeness.

Are y'all planning on stopping by tomorrow before/after Dr. Cary's visit?

🌸 Carter

Kate Scattergood <kscattergood5@gmail.com>

Jaquelin Spong Elizabeth Sohn John Chipley

May 31 at 8:10 PM

That is excellent news! Thank you so much, Jackie, for taking such good care of our weird father. I look forward to meeting you soon!

~Kate

Carter McClelland kscattergood5@gmail.com

May 31 at 11:07 PM

The drinking seems stable from what I can tell. I've never

seen him seriously incapacitated by it, so I doubt the emails

were a result of being under the influence.

Carter- I asked him whether he felt up to coordinating a visit.

You prolly know he is a big fan of Fosters Grill!

I leave it up to you and he to figure that out. I just provide

transport when/where needed! But I doubt it would be

before, as I need to take my daughter's car in for repair in

the morning.

And Kate, I look forward to meeting you, too, and congratulations

on the various graduations, etc. in your midst!

So far, so good!

Jackie

The Saucy Dish Carter Ann John Chipley

Jun 1 at 5:12 AM

Way to go, Spongo!!!!! Thanks for watching over our sweet cowboy.....love, me

Sent from my iPad

Now we begin the longer and more detailed aspects of the adventure.

On Wednesday, June 1, 2016, Daddy had an appointment scheduled to see Dr. Cary in Manassas for a follow up to all of the weird things that had been going on. Extreme fatigue, confusion, writing in jibberish with no memory of it. Just a lot of weird things going on that need to be looked into.

Dr Cary took one look at him and called 911 to take him to the local hospital here in Manassas. I drove over there and took over for Jackie, who needed to get back to Mt Jackson to take care of Daddy’s pets and other aspects of life on the mountain.

All labs were taken again, and both liver and kidney numbers were significantly higher/worse than the ones taken at SMH just 24 hours before, so this means things are shutting down quickly and we need to act fast to find out what’s going on. Daddy had so little strength he couldn’t sit up in the bed by himself.

I stayed with Daddy until he was admitted and very sleepy and ready to go to sleep. It must have been around 10:00 or 11:00pm.

--------------------------------------------
On Thu, 6/2/16, Carter McClelland <daizymeigh@yahoo.com> wrote:

Subject: Thursday noon updates

I got here around 9:00. He had eaten some breakfast and seemed
about like he was yesterday. Making good sense, cracking
jokes, flirting with the nurses.

I brought him 2 days worth of Washington Post
funny-papers, 3 books, a sketch pad, notebook and collection
of pens and pencils. GG insisted on sending a stuffed
too.

He said that just about every hour someone was
poking and prodding and investigating something in or on him
all night. But he wasn't sure if they were giving him
meds/fluids or taking samples for tests.
He said the ultrasound person was here before I
got here to look at his kidneys. We haven't seen or
heard from any blood work or other test results as of
now.

A Physical Therapy team stopped by to test his
ability to stand/sit/walk. He passed those tests so they
said he does not need physical therapy. They made a few
suggestions for changes/updates to the house for his safety.
Shower bar, and railings coming up the steps from
outside.

They aren't thinking about releasing him
today, and I'm not sure I'm happy about the
possibility of him living alone for a while. Based on what
I'm seeing here, I'm not letting him out of my
sight.

We had a bad spell while napping just now and he
stopped breathing. I ran down to get the nurse but he was
breathing again when we got back into the room. He was hard
to wake up and confused and made zero sense upon trying to
talk. He's being put on oxygen. Nurse said it sounded
like sleep apnea, but again, that isn't something they
can test for and diagnose HERE, so he'll need to go to a
sleep study location for that. Again, I don't want him
living alone until we get that done.

He asked me to slip him some booze, but
there's no way in HELL that's happening. Like I said
yesterday, he's EXCITED to get answers, find out
what's wrong, be HONEST with everyone about his
symptoms, drinking, lifestyle, etc so he can TRUELY get
better. He's looking at this as a clean slate, a fresh
start, and the chance to really get a whole body
restart.

So... That being said... Visiting friends...
Please don't sneak in anything. We all watched CC die
that way, and I'm not going to let that happen with
Daddy.

Jun 3 at 8:34 AM

Good morning! And yes, it has been a good morning.

I got to the hospital this morning to see Daddy at about 6:30, and he was just waking up. He was alert, aware of his surroundings, knew me, knew that I was just arriving for the moment, and seemed WORLDS better from just last night.

Some of the news may be duplicated from yesterday. My days are starting to blend together and I may have told some, or all of you some or all of this already, so bear with me.

I think I had everything up to date around noon yesterday, so we all know he doesn't need on-going physical therapy, if he goes back home to live alone, he'll need a few changes made such as a shower bar and railings on the car port step up into the house.

He took a nap after his physical therapy test, on his back, and he had very labored breathing, a lot of snoring which varied in volume, tone, and all sounds possible. He then stopped breathing, face scrunched up, abdomen rising and falling like he was trying to make himself breath. So I got a nurse, and he was breathing again when we got back in the room. He was very hard to wake up. And confused and not making sense. Nurse hooked him up to the oxygen and he napped on and off the rest of the day on his side with MUCH improvement.

They have a great food menu and he can order whatever he wants whenever he wants. He had a roast beef sandwich and iced tea for lunch yesterday that he loved, but an hour or two later he told Aunt Sister on the phone that he wasn't allowed to eat or drink anything and he was hungry. Even though I ordered extra sides/snacks for him so he could munch on things based on his appetite and he continued to insist on not being hungry when I asked him if he wanted his other snacks.

Back to the oxygen, if his numbers go below 80 he needs to take in some oxygen, but otherwise he needs to let his body do its thing so he doesn't become dependent on it.

Again, midday Thursday, the pharmacist for the hospital called to verify his long list of meds, and I told him all of the medications were here in the room, he was welcome to come look, which he did. Daddy hasn't had any of his from-home medications since Wednesday, so it will be interesting to see what the Drs today say-think about that.

His kidney dr, Dr Kim, reported a slightly fatty liver, no major issues with the kidneys, but his numbers were still bad. He said that with kidney and liver issues, the numbers will go bad, then stabilize, then improve. On Tuesday his numbers from the Shenandoah hospital were bad. When he was tested again the next day here in Manassas, they were "significantly worse". When he was tested over night Wednesday/early morning Thursday, they were the same as reported Wednesday afternoon at the ER here. Have not heard about today's numbers/tests/results etc as of yet. Dr Kim says no more spironolactone for now, liver issues seem to be improving, but still not good.

Then we met the neurologist, who has the bedside manner of a rusty nail. Very strict, no chitchat! I wrote notes as fast as I could, and she almost spoke just like I was writing. Her report is that Daddy is sleep deprived, elevated liver enzymes are toxic to the brain, booze is toxic to the liver and accelerated the toxins in the brain, he has to significantly reduce the drinking.

He had a CT while in the Shenandoah hospital which resulted in us (Daddy and Jackie) being told there was nothing to report. I don't know the exact wording... Nothing new, nothing there, nothing out of the ordinary... But whatever the wording, we were all led to believe there was nothing in his skull other than fresh pink healthy brain matter. The ER dr HERE gave me the impression there WAS something on the CT performed here the very next day, but he was vague and aloof when it came to specifics. When I asked Dr Hoda Hachicho about the 2 tests, she went back to review them and then came back to tell me, yes, he has scaring of a past old mini stroke. There is scaring from this event, but she said they are very common. She told me if I can get the results from Shenandoah, she'll review them to see if there really was something on the scan from there, or if this is a new "old" mini stroke meaning happened between Tuesday's CT and Wednesday's CT.

***We interrupt this story for a small bit of user error, in which Carter hit the SEND button prematurely.***

Crap! I hit send when a nurse came in and I had to shift. My apologies. I wasn't finished with the updates.

So, in my notes I'm now up to about 5:00 Thursday, June 2.

Kirby and Jackie came for a visit and I headed to Genna's school for her kindergarten "promotion" celebration.

Got back at 8:00, K and J had gone, Daddy was napping, and there hadn't been any dr visits, results or tests in my absence. However, Daddy was more confused than he'd been most of the day. He asked if I was there with K and J were here, asked if I was here for his supper, and he was wearing his oxygen tube even though I'd explained to him he only needs it while he's sleeping.

Kirby and Jackie brought a nice collection of electronic gadgets, movies, magazines, etc. On a very sweet and cute side note, his heart rate jumps up to over 109 when he reads the motorcycle magazines. That made me smile yesterday when I noticed it.

Daddy mentioned Jackie was headed out of town this weekend, so she was going to take Daddy's dogs to a local kennel for the time being, but with him being foggy last night with that news, I'm waiting for confirmation from Miss J on that.

At 9:00 last night he got a shot of heparin, a blood clot-stopper, and that was the first time I had seen him administered any medicine.

9:15 Thursday night, last check in with nurses, he was ready to go to sleep, so I packed up and headed out.

I stopped at the nurses desk and spoke with Nurse Maureen who was his overnight nurse last night. I asked her about a possible rumor that he would be discharged today, she read through everything and confirmed that there are NO notes from anyone about a possible departure date. This relieved me greatly, because we still don't know much at all, and I'm not ok with them just tossing him out on the street. So, fear not, that's not in the cards. Maureen also requested we get a case manager to help us coordinate all care here in the hospital and his at-home care when that time comes. We'll get to meet the case manager today, hopefully.

So, here we are Friday morning, and I got here at 6:30 to find a just waking up Daddy who was alert, aware of things, strong, and ready for his paper and coffee. I gave him the paper, no coffee. I'm not excited about caffeine in a questionable system with a weak heart and being off all meds for 3 days.

Then, as I was writing, morning nurse, Jeneah, came in with an aspirin, protonix (nexium) and toprinil (imipramine). I'm sure I didn't come close to spelling those meds correctly, so please forgive me.

And here we are at just about 9:00. He had blueberry pancakes for breakfast which he loved. They smelled divine! He's reading a car magazine, his heart monitor was just going berserk, up to 109 with excitement. I'm poised with pen and paper awaiting Drs, specialist, and nurses with news of results, findings and more possible tests.

I'll send another report with either a newsy update, or later tonight if there aren't really any updates at all.

🌸 Carter

Jun 3 at 11:16 AM

(Friday)

Looks like they are letting him go today, after all. But we're still moving forward with putting the pups in the kennel. He'll be at our house until we know for SURE that he can safely live alone. That means until we have the sleep test done and at least one follow up with Dr Cary and Dr Brain and Dr kidney. He'll be coming home with an oxygen system and we will still meet with the case manager.

About an hour ago, Dr Patel (ER dr from here in Manassas) came to give us the news.

Kidneys are almost back to normal. They took him off diuretics and pumped him with fluids, so he's going to consult with Dr. Kim (kidney Dr) to agree on a new/different diuretic, and take him off of the IV drip. He still needs a diuretic of some sort for the heart function, but not the one he was on.

Liver on day 2 was in the thousands and is now better. We are stopping all statins. Tests even improved today from yesterday.

He. Has. To. Stop. Drinking. Alcohol. And he knows it and understands the importance of that.

Dr. Patel expects complete liver recovery in a couple of days.

Ultrasound of right upper quadrant showed fatty liver, but nothing massive.

Neurologist gave him the all clear.

Ammonia levels were and are normal.

Follow up with:

Dr. Cary (PCP) and get sleep test scheduled ASAP.

A Neurologist within the next 2 weeks.

Dr. Kim (Kidney) within the next 2 weeks.

He is no longer taking:

Ramipril

Spironolactone

Gemfibrozil

Atorvastatin

I've ordered him some lunch, he's napping again, and I'll update if there are changes.

🌸 Carter

Jun 3 at 3:38 PM

Friday, June 3, 1:30 update

I must have asked too many questions and scared the weezles out of them because they are keeping him for another night.

Right after sending the noon update I went to the restroom and came out with Daddy's heart rate at 155!! It quickly went back to his "normal" 100-110, so I went to the nurse’s station to see what their thoughts were and for another cup of tea. Nothing like this had happened before, so I thought it was a loose cable and went to ask if the ladies tending to the monitors had any thoughts.

Upon getting to the nurses station, OH YEAH, THEY HAD NOTICED. At least 5 people were swarmed around several computers, pulling up charts, looking at who's monitor was showing what, everyone thinking they're computer had just glitched. Back and forth between computer to computer, "he has a pacemaker... he also has a defibrillator... he had a heart attack" all of them muttering things and talking over each other and looking.

So I stood there. Let them do their thing. Then they noticed me. I said I was his daughter and they all got a little quiet, so I got out of their way so they could talk freely.

A few minutes later, his heart rate jumped back up to the mid 150's and the nurse was in here when it happened and I may or may not have put my hands over my ears and closed my eyes fearing his pacemaker was going to jolt him into next week.

Luckily, again, it went back to normal just as quickly as it went up so his defibrillator/pacemaker did not automatically activate.

The case manager, Stephanie, came in to introduce herself about a half hour after all of this, but she had not been told of any of this, so she wanted to confirm with Dr Patel and nurses before really getting into his discharge plan. I was a whirlwind of questions and I think she may have sensed that discharging him today was not best.

My questions included:

- will we be issued an oxygen tank for his sleeping until we can get the apnea test?

-he hasn't had ANY of his meds in a week, and they haven't been reintroduced at all so what are the possible side effects going to be when he does begin them all? Will it be like when the power goes out at home, then comes back on and blows a circuit?

-why aren't we going to reintroduce his meds here and allow for observation? Am I going to give him his meds tonight and find him dead in the morning at home?

There were more questions but she didn't have any answers for me, so she politely excused herself to go find some of my answers and to look in his files. She also hadn't seen anything in his files about one of the major health factors (my apologies, I can't remember if she didn't know about the heart attack or one of the most recent kidney/liver/confusion issue), and that also surprised her, so again, she wanted to revisit the info and find out a little more about her client. (And his crazy daughter asking things like who to call for the apnea test, how long is the waiting time to get the test, etc)

So then, within about another 15 minutes, Dr Patel came back in and said he's staying another night after all. I could have hugged him I was so relieved.

Then the pharmaceutical students came in to see how much he knew and understood about his heart failure. He misunderstood them and told them everything about the past week's events. AND the good thing about that was that he had it all right. His memory, speech, and understanding of time and events was seemingly back to where it was 5-6 years ago.

They had some booklets, a pamphlet, and a list of his new/changed meds. New rules to go by, and reminders of things to do. Things such as he needs to weigh himself daily and record it to monitor 3 pound gain or loss in a day or 5 pound loss or gain in a week. These aren't good for him. Check ankles and feet daily for swelling. Check BP daily and record it. If the top number is 90 or below, that's too low and he'll need to get that addressed ASAP. He can only take Tylenol for his OTC pain relief of headaches, muscle pulls/sprains that sort of thing. No NSAIDs at all. No aspirin for pain control. JUST Tylenol.

Kidney Dr came in at the same time. He did a quick physical exam, said Dr Kim, the kidney Dr from yesterday would be back tomorrow and would check in then with any other test results.

He is to limit his sodium intake to less than 2,000 a day. Forever, a max of 2,000 daily, no wavering on that. (Since writing this, we were told 1,500 mox)

The pharmaceutical students suggested he go to a multivitamin instead of the individual vitamins he's currently taking.

And, he will be back on a statin at some point, per Dr Cary's (Daddy's PCP) request, assessment, advice and can NOT drink grapefruit juice or eat grapefruits again while on the statin.

So... To sum up... As of 3:30 he is NOT being discharged today. They are reissuing his meds while in the hospital to observe everything and monitor them and him. There has not been a third incident of his heart rate jumping into the 150's. He's currently at about 110-115.

At home: No booze of any kind, no grapefruits of any kind, a max of 2,000 sodium (now 1,500), only Tylenol for occasional aches and pains, daily weight check and log, daily BP check and log, daily foot/ankle check for swelling. And I'm going to INSIST on some form of oxygen coming home with us because even on his side while sleeping he's dipping into the low 80's.

The follow up schedule hadn't changed. Kidney Dr and Neurologist within 2 weeks. Dr. Cary within a few days (Monday). Have Dr. Cary order the apnea test.

He's napping now, had a huge lunch, had more energy than I've seen all week, and hasn't had any confusion or slurring today.

I'll update if there's another change.

🌸 Carter

Jun 4 at 10:05 AM

(Saturday)

Morning!

Things seem to be improving and improving. Rumor is still that he'll be discharged today.

I've met briefly with today's case manager who is helping find the best at-home oxygen system for him and helping with sleep study info.

Yesterday she couldn't schedule the sleep study for him because there still is no official Dr order for it. She also couldn't get the oxygen because there was no official Dr order for it.

(Insert images of me fuming, smoke coming from my ears and fire shooting from my eyes.)

THEN, to add to my mounting frustration, this morning's nurse comes in and asks if he would like to go off his oxygen today to try it before he goes home.

SHE HAD NO IDEA about his stoppage of breathing while sleeping, NO IDEA about his need for oxygen, NO IDEA about why he was even here. Oh my lord, y'all... If you hear on the news later about a 42 year old woman who committed murder in a hospital, it'll be me. I just about went through the roof.

After her irritating questions of, "Oh! Have you told your Dr this?" And "Oh! Has anyone talked to you about a possible sleep test?" I lost it.

YES! That's why we're here. And all of this should be in his chart!

She had a soft, mousy reply indicating she would go check on these things, then asked if we had any concerns.

I said, "YES! I'm very concerned that you aren't aware of any of these issues."

Ok... Calm... Breathe... Don't strangle nice incompetent nurse. That won't help.

She asked if Dr Patel had been in to talk to us this morning, which he has not, and again this confused her. She said he was here, did his rounds and left. But he never came in this room.

Daddy doesn't have his pulse-ox monitor on today, but is still wearing his oxygen.

After a few more questions regarding discharge, and looks of utter confusion from the NURSE, I finally said, "He's not leaving this room without oxygen. Until we can leave this hospital with a concentrator or a portable tank, we're not leaving."

It seems all internal organs are now functioning ok and as expected, he's strong enough to walk to the potty, can move freely as well as he could several months ago, and is aware and understanding of his dietary and medication changes, so we just need some good quality O2, and we can blow this popsicle stand.

That's where we stand as of this morning.

I was told by the case manager last night that Saturday discharge and Saturday orders for oxygen can take FOREVER, so we're just waiting for the final orders and things to transpire.

As we know... Things change just about every hour around here, so I'll update when/if there's a shift in plans.

🌸 Carter

This hourly update brought to you by the Novant Health Team of Get The Hell Out and supporters like you.

Daddy is up, dressed, and waiting for the final word to go home.

Before official discharge, we'll need new medication list of types, names, quantities and taking times. Exact details on who is bringing the O2 equipment, what is being brought, and instructions on how to use it. And what his mobility allowances are.

🌸 Carter

Now things start to switch from the Liver/Kidney failure to other new developments…

I asked a good friend of Daddy’s a question about something medical that I noticed and was concerned about. This friend has a medical background and had offered to answer questions for me.

Jun 4 at 2:07 PM

Another quick medical question, not for the mass group... Daddy's belly is so bloated his pants won't button. The pants he wore in here on Wednesday. Is this a concern? Should I ask someone about it?

🌸 Carter

Jun 4 at 2:49 PM

(Answer from friend)

Yes! It is a concern! Ask! Sent from my iPhone

Jun 4 at 4:40 PM

I asked the nurse and she laughed, didn't seem too concerned. It still bothered me, so I asked her to weigh him so we would have a starting weight of Wednesday and an ending weight today. He went from 177 to 199 in 3 days. That's NUTS.

I called Dr Cary while on the way to get his Rx’s filled, and he's surprised that they let him go. I'm to watch him today and if he doesn't look right and if my instincts tell me something is still wrong, I'm to call 911 again and have him taken back to the ER.

So ... That's the latest. I'll update the regulars in a bit. He's napping upstairs in my bed now with his oxygen. I checked on him and he's breathing just fine, seems cozy and content.

*Carter*

Jun 4 at 7:24 PM

Back in ER. I'll update when I know more.

🌸 Carter

Jun 4 at 9:25 PM

As we have seen things change by the hour, so a lot has happened since this afternoon.

Daddy was discharged around 3:00 with the incompetent ninny of a nurse in charge. He said they didn't even give him a walking test to see if he COULD walk without getting winded.

We drove to the pharmacy to fill his new diuretic medication and when we got there realized I'd left his bag of meds and wallet "hidden" in one of the cabinets in his room.

So I took him to our house, Patrick was there with the oxygen guy, and I went BACK to the hospital for Daddy's bag then BACK to the pharmacy to pick up his new meds.

On the way, I called Dr Cary, Daddy's PCP to ask about the bloated belly (he was checked into the hospital on Wednesday at 177, and left today at 199! 22 pound weight gain in 3 days!) and to let him know I was feeling very uncomfortable about it even though the nurse poo-poo'd it and didn't seem to care.

Dr. Cary was horrified at the things I told him regarding Daddy's condition over the past 2 days (the spike in HR to 155 twice, his dark urine, his blood saturation going into the 20's at times) and he told me to watch him carefully and to get him back to the ER if he looked, sounded, or felt different.

When I got home, Patrick had already helped Daddy upstairs to our bed and connected him to the big oxygen machine and tucked him in for a nap. I checked on him and he was snuggled up like a baby, sleeping fine, no scrunched face, no snoring, no labored breathing.

Patrick said he was extremely out of breath after climbing the stairs, but was very comfortable and relaxed after being put to bed.

I let him sleep, figuring he was happy to not have beeping machines and people checking on him every hour.

Around 6:00 I heard him get up and go to the restroom so I went up to see how he was doing. And he was not doing well at all. Said he felt terrible, like he had the flu, and was having a hard time breathing. So I called 911 and we came back to the ER.

He's having a very hard time breathing without any oxygen assistance at all, he was out of breath and too weak to move from the ambulance gurney to the ER gurney. He tried to lift his knees to make a platform to write an email on his iPad and it completely took his breath away, couldn't get any air in, and had to put his knees back down.

They are running another round of tests and said we'd be here at least 3-4 hours just until they get the results of tonight's tests. Then they'll decide if they're going to admit him.

I have Patrick with me, the kids are at a friends house, and Patrick is able to talk emergency medicine with the staff so hopefully we can get more info.

The rumor tonight is that what he's experiencing now is alcohol related, so a lot of blood work is being done and a lot of people asking about his alcohol intake of the past.

As always, I'll update as I get more info.

🌸 Carter

Jun 5 at 12:26 PM

As promised, here is the latest update.

Last night/early this morning, Daddy was readmitted to Prince William hospital here in Manassas after the ER crew agreed that we still need a lot of tests to figure out what all is happening.

I stayed with I'm until he was settled in his room, plugged in and started to relax with the nurses taking the last round of vitals before he went to sleep. His room is much smaller than the previous one. He's in what's called The Critical Decision Unit now. I have no idea what that means, but it's on the first floor and right next to the ER. He has a sink in his room, but shares a full bathroom with an adjoining room and patient in said adjoining room.

Dr. Patel is still here and he's once again/still leading the team on what to do for Daddy. I explained to ALL of the nurses and Drs that Daddy is very literal with his questions and answers, meaning, if he's asked how he's feeling, he will answer with, "better", but that doesn't mean he feels GOOD. It might simply mean he feels better knowing there's a Dr in the room who's here to help. Also, we're Southern. You ask us how we are and we automatically smile, say, "Oh, I'm fine! How are you?" I believe that was a good bit of our issues yesterday. His blood work came back stable, he said he was feeling "better" or "fine" when in fact he felt like crap, still couldn't breathe, and was scared to death, but he wasn't asked those things. And, with the numbers coming back ok, there wasn't anything "wrong" per say, so he "should" feel ok, and if the Drs say he's ok to go home, then how he's feeling must not be indicative to the test results.

So... I asked all of the medical persons to ask him WHAT he is feeling. And to ask SPECIFICS on things. And I've instructed Daddy to tell the truth, the whole truth and to add things if he wasn't asked specifically about something that's hurting, tingling or falling off. HE (and I) are in charge of his care, not the Drs.

I'm newly in love with the female kidney Dr who saw him 2 days ago and then again today. After I explained that we needed specific questions, she started asking them, and all of our answers made her say, "Wow! There's still a lot unanswered and unknown here." YES! THERE IS! My beautiful robed woman, ask, ask Daddy, ask me, ask the other people in this flipping hospital who have been seeing and treating him. Ask away dear lady and let's find out what is happening.

Today, Daddy is having a very hard time breathing. Can't catch his breath, can't take deep breaths, and everything exhausts him and takes his breath away. In addition to this, he's having panic attacks over the inability to breath, causing more breathing issues, creating a cycle that I'm helping him cope with when it starts up.

His lungs sound clear and appear clear on the chest X-rays. Blood work all showed no significant change from the last round in which they said things were either improved or the same from earlier reports, so no further deterioration in liver or kidneys. They did a blood test to check for the elusive O2 levels that the sensors can't detect through his fingers, and they were good.

So... Today they are going to keep him comfortable, do a Doppler test of his legs for blood clots, and start meds to protect his kidneys for a CT of the chest and abdomen to see better what's going on. They'll look for fluids, pneumonia, collapsed lungs, and blood clots. They have to prep him today for the CT because his kidneys are so bad that the dye used in the CT will not be good for his kidneys in their current state.

We're also getting a new echocardiogram tomorrow and a consult with a cardiologist once those results are in, because his cardiologist in Winchester has yet to show face, or say a word of any kind, so screw him, give me/us someone here who can take over NOW to get this straightened out.

He needs to stay slightly dehydrated to keep fluids from collecting in his lungs, but can still eat regular approved hospital meals and have his ice chips.

His speech was slurred again while talking to the Drs. I pointed it out and Daddy agreed that he noticed it too. I asked if he felt his mouth was overly dry, or if he was too tired, he said yes probably both of those things. And both the kidney Dr and Dr. Patel and this shift's nurse were all here for that conversation.

Kate is on her way up from NC. Since we know he'll be here for another 2-3 days at least, she wants to be able to ask questions and hear about test results first hand as well.

Ok. That's all I have for the noon report. I'll update as usual with any significant news right as it comes up, or with an overall report later tonight.

If anyone on the mountain wants to go check on the kitty cats, I'm sure that will make Daddy feel "better".

🌸 Carter

(Quick note from a good friend who wanted to know about visiting…)

Thanks again… today doesn’t sound like a good visit day. May call you later about coming by tomorrow.

Carter McClelland <daizymeigh@yahoo.com>

Jun 5 at 12:52 PM

Sounds good. Yeah, he's more scared and bothered by things now and trying to look tough and OK and trying to think of quirky comebacks and jokes is too exhausting for him. Even though that's what makes him feel like himself, normal, and good, it's still taxing. I'll let you know though if he feels better tomorrow.

His room is a central room so no windows and not great reception, so I might not get calls as easily as when in the other room. But still feel free to try! If it's not a good time, I just won't answer and you can leave a voicemail or email/text and I'll get back to you (any of you, this is to the "royal YOU") when I can.

So, yes, feel free to call and If I can answer I will. 571-213-0681.

🌸 Carter

Jun 6 at 8:14 AM

Hello Friends and Family

As of today, Monday, we once again have more questions than answers. Because things change so much and so fast, I'm going to skip over some of yesterday's happenings that don't pertain to the condition now.

Pulse ox can't detect anything because of his Raynaud's Syndrome. That's what causes his hands to go blue/purple and be cold. So they're finding out what's going on with his blood gasses the old fashioned way, by drawing blood directly and testing it. As of last night, those numbers were still good.

His breathing has quickly become more labored, he's struggling to get air, and can't get full deep breaths at all.

He had a CT of his lungs last night. The nurses said there are things to report, but they can't tell me, the Dr has to come tell us. So, we're waiting for the Dr who could be here between 8-10.

No improvement from yesterday's report, unfortunately. But he was given morphine to help with the pain he finally admitted to having in his abdomen, and to help with the anxiety. That knocked him out and he was as loopy as a rubber band factory. If they keep giving it to him I'll start a second email report of "Daddy On Morphine" one liners and conversations, because they're funny as HELL.

He's not making any sense this morning. No real words are being formed, but he's still on some strong meds to relax him.

He has also been given Ativan to help with the alcohol withdrawals and DT symptoms, so we could be dealing with the effects of that as well.

So, that's about all I know right now. I'll update again when I know more.

🌸 Carter

Jun 6 at 10:07 AM

CT showed no clots, but fluid is starting to collect in his lungs and there is slight lung collapse.

For now, what we're dealing with is DT's and withdrawals. This could take days or weeks. It could get worse, it could improve, we're just not sure and everyone is different. He's still in the CDU, but he's being very well watched by nurses and the plan is to move him to a more permanent room for his "stay". If he gets worse he'll go to ICU, and I *think* Dr. Patel is expecting that, but can't say for sure. So we're waiting.

He's in the full throes of withdrawal/DT's. He has a full time sitter, issued by the hospital to protect him from himself. Kate and I are here, with no plans on leaving any time soon.

He needs to have a swallow test because he was choking on water last night, and as of this morning, all meds are being administer via IV.

If anyone wants to see how important it is moving forward to ensure he stays sober, now is a good time to visit. In fact, if/when things get really ugly, Kate and I are going to film it so we can show him what's happening to him once he's lucid again. (Which we did, by the way.)

🌸 Carter

There was a brief note from a friend who has some experience with alcoholism and felt the above diagnosis may be incorrect and that the issues may be due to the change in meds, not the DT’s from booze.

Jun 6 at 11:13 AM

Thanks. Yeah, it's the booze, not the meds. The Dr's have told us what's normal and that the symptoms can come on as far as 3-5 days after the last drink, so we're at the tail end of that now. They say everyone is different, so we're just doing what we can to keep him comfortable while his body fights.

🌸 Carter

To a friend who asked about visiting…

Jun 6 at 11:17 AM

You're welcome to visit if you want, but he's mostly unconscious, can't communicate, and is becoming combative. So, it's not a pretty picture and he won't know you're here unless we take pictures and show him later.

We have put him back in the cpap machine because his stoppage of breathing was getting worse and longer, so he's trying to fight us and his attendant to get it off.

I'll update more as things progress.

🌸 Carter

Jun 6 at 6:54 PM

It's not looking good. I know you don't want to hear that... But we need to start to think about the unthinkable.

🌸 Carter

Jun 6 at 6:48 PM

Well, not much good to report, I'm sorry to say. Daddy spent all day on his CPAP machine with no improvements. Completely incoherent and only opened his eyes a few times, but never formed real words.

Cardiologist says his heart is in worse shape than we thought, and we're just in a watch and wait stage.

All doctors are playing the teeter-totter game of adding fluids to help kidneys but not too much fluids which will collect in his lungs and chest. He has the collected fluid now, so a diuretic has been given and they're inserting a catheter so they can monitor his fluids.

He also has the deflated lungs, but no clots!! Yay! No clots!

Everyone seems to have their crystal balls in the shop for repair, so they can't tell me when/if he'll improve and to what degree and or speed that might happen.

The bottom line is we're waiting for his body to fight through the DT's, which is very taxing on his heart. And as we all know, his heart is only at a 13% ejection fraction. So it's not great.

His kidney numbers were going back up (which is bad), but it's still that very delicate balancing act of kidneys need water, water kills heart. Heart can't have water, lack of water kills kidneys.

Kate and I were at the hospital for almost 12 hours. Dr Patel told us to go home to rest.

Daddy has a DNR order, and his exact words, spoken TO the attending ER Dr. in the ER on Saturday were, "If I'm good and dead, leave me there."

My crystal ball is in the shop too. But I'm scared. Not gonna' lie. I'm not a happy girl. From what I'm seeing and hearing, and my very limited knowledge of physics and science, I'm having a hard time believing he's going to get over the DT speed bump.

His heart rate has been in the 110's all week. Sleeping and awake. He was dipping into the lower 90's tonight. Things are slowing down.

But, he's My Daddy. And I've told him he's not allowed to die. Ever. He knows that. So I won't allow it.

🌸 Carter

Jun 7 at 7:13 AM

HE'S ALIVE!!!!

Super Tuesday