Monday, Monday, Can’t Trust That Day

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Let’s back up to Saturday.  Allow me to fill you in.  Mr. T and I got up Saturday and ran by my parents house to pick up some stuff and feed the dogs and then we headed over to Dallas.  We got to see Lee, sit with him, talk to him.  Mr. T went to lunch with my parents and I stayed and kept Lee company.

Lee is still in a coma.  He has been sedated for two weeks, but this last week after a pretty bad incident, he slipped into the coma and hasn’t surfaced yet.  The doctors have said that the congestion in his liver may be a contributing factor and they have worked very hard to get it functioning again.  But, I sat and held his hand, talked to him, read him updates from his Facebook.  Read him the well-wishes from mine.  It is hard to look at him and not see my brother. This is not what is suppose to happen to my brother.  My sister had told/warned me about some of the things I would see, but until you are there, until you are in this situation, you can’t comprehend it – and there aren’t enough words for me to make you understand.  I stayed for a little over an hour and then Mr. T and I left.

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We went straight to the movies.  Iron Man 3.  I’ve read mixed reviews about it – but I’ll tell ya, I really enjoyed it!  It was a good movie, fun to watch, filled with action and the snappy one-liners you’ve come to expect.  And I really love the relationship between Tony Stark and Pepper Potts.  They aren’t all lovey-dovey (which drives me nuts) but there are times when Tony looks at Pepper and you can see that he would indeed, die for her.  It was good – plus, it was a good way to cleanse our palate after the visit with Lee.

We no sooner got home and changed clothes, and Mr. T took off on his bike, that my dad called.  He was on his way home… apparently when my grandmother couldn’t reach me to verify I had fed the dogs, she came over to feed them and discovered that the downstairs bedrooms were flooded.  Now, I had been in those bedrooms on Friday and they were fine. She got there Saturday afternoon and they weren’t.  It’s a really good thing she couldn’t reach me and went to their house.  The downstairs bedrooms have a Jack and Jill set up (which means the two bedrooms have a bathroom in between them) and apparently the supply line for one of the sinks ruptured… not good.  Dad asked if I would bring Mr. T over to help him move furniture.  No problem.

Or so I thought.  I called him and called him and called him.  I stood outside waiting for him to ride by on his bike so I could get his attention.  After 20-30 minutes I got in the car and drove all over the neighborhood… three time.  Finally, after almost an hour, I couldn’t leave dad in the lurch, so I headed over there.  (Oh, and I texted T’s phone, his iPod and tweeted him to call me!!)

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he did eventually call me – he had forgotten his phone at home…

Most of mom and dad’s furniture are antique – and these two bedrooms are filled with furniture from my great-grandmother’s house.  And, my parents are pack rats.  So all of the furniture is stuffed full.  Dad and I moved out as much as we could.  We emptied out the closet floors that were impacted.  We worked up a sweat.  Then it was time to tackle the plumbing.  Oh my goodness.  This faucet was insane.  I mean, there is no way a human designed how this faucet was put together – it was way too diabolical.  Hours later, dad gave up and just took the entire thing with him to Home Depot.  He picked up Mr. T on the way and then picked up tacos on the way back.  I stuck around and waiting with Dalworth Restoration did their thing.  They suctioned up about 50 gallons of water from the bedrooms.  And left behind about 6 industrial fans and one de-humidifier.

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Thank goodness the flood wasn’t this bad!

By Sunday I was pretty exhausted!

Now it is Monday.  Lee isn’t doing well.  He had upper and lower GI bleeding and they took him in for a CT scan of his brain this morning.  The CT originally wasn’t scheduled to happen until later this week.  My sister and I (and several others) are impatiently awaiting the results.  I know that they are looking for brain activity.  His pupil responses are getting slower, he is not reacting to pain and he is only kinda controlling his breathing.  It’s just not looking good.  My dad has already asked, and my sister and I both said yes, if they take him off life support, we want to be there.  I don’t know if it is funny or sad, but the kids have already told my sister and I some of the items they want if “worst case scenario”.  I’m actually okay with that.  There was a moment of shock, and then I realized that it’s just part of the process.  I was, however, hesitant to mention it to my sister, and felt a huge wave of relief when she said her kids had done the same thing!  It helps with my kid isn’t the only one!!

I’m sitting here waiting for Dalworth to make it by to check the saturation levels in the bedrooms.  It will take a couple of days to dry out – but the fortunate thing is that it was clean water, and we caught it so soon – we don’t have to replace any carpet or drywall.  So, yeah, I’ll take that little victory!

But still, I don’t trust Mondays anymore…

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The Letterman’s Jacket

Before I give you my brilliant post – let me update you on my brother.  He had a great Monday.  I went and saw him Tuesday and he had a less than stellar day.  I had to be home before Mr. T, so I left Dallas early.  He was acting odd, ended up falling out of his chair and was struggling to get comfortable and even struggling to think and form sentences.  A couple hours after I left, they ended up sedating him and putting him on the ventilator.  This was devastating.  While he was under, they were going to do a contract CT and see if there was something they were missing, like a blood clot, an infection, an inflamed pancreas – anything.  If it was operable, the surgeon was going to take the risk and operate.  In the meantime, earlier in the day a couple of departments, like Pulminology, signed off on the transplant, and one of his doctors was talking about doing the LVAD this week.  Things were really looking up, despite the fact that he was having such a rough day.  I let my friends and family know that things were rough and to please keep sending prayers.  I let my good friends know that it was a make-or-break it kinda night and there was a big possibility that Lee wouldn’t make it through the night.  The CT scan came back clear, there was nothing that they could find.  And, he made it through the night.  Thank God for prayers.  This morning he was fighting to breathe over the ventilator, so they are keeping him sedated.  He also had a fever of 102.9 so they have packed him in ice.  A few hours went by and his fever is up to 104 and now they are worried about septic or cardiogenic shock.  Both of those are very serious.  Cardiogenic shock is a big concern.  So, blogosphere, I appreciate you keeping him in your thoughts, prayers and sending good energy his way!

Now, onto other things!

Okay, when I was growing up, you didn’t get a letterman jacket until you were a junior in high school.  In fact, I seriously remember turning my nose up a freshman who had the audacity to get a letter jacket when she was a freshman.  Yeah, I wasn’t as accepting of people back then.

Actual letter jacket for our school... not ours though!

Actual letter jacket for our school… not ours though!

Apparently I hadn’t fully let go of that preconceived notion, because my freshman son came home with a letter jacket order form.  He has enough points to qualify for one.  My jaw hit the floor.  I was like, but, but, uh, what??? Really?  I totally hadn’t expected this.  Now, keep in mind he is at a new high school, they only allowed freshmen and sophomores in this first year and at first I thought that these kids could get their jackets early because of that fact.  I was wrong.  When I posted on FB about this, someone responded that their freshman girl was getting one – and they are in a different school district.  So, apparently the times have changed.

I never got a letterman jacket – I qualified and had the letter and patches, and my parents gave me a note for my birthday or Christmas or at some point that said that they would buy me one.  But, they never mentioned it again and I never brought it up.  I mention this, because I started to fill out the form, and well, I couldn’t   The form was smarter than I was.  Mr. T and I were next to each other going over it, and what he wanted and well, I got the basic understanding, and then had to call the shop and left a message to have them call me back.  I felt silly! I mean, it’s a form, for a jacket.  How hard can it be?

The form was not this easy...

The form was not this easy…

I called again the next day and got a great guy who assured me that I was not the first parent that was stumped by the form.  Thank goodness!  I don’t care if he was just being nice; I’m taking his word as gospel that others struggled to fill out the form properly! With his help I was able to figure out the form and then regroup with Mr. T and figure out what he wanted and how to order it.  (And, I still must have done something wrong, as my math was off!  The receipt came back with all my calculations crossed out and new ones entered!  Granted, I was only $10 off – in their favor of course – but still!!)

I’m telling you, it was a production! All for a jacket, that for the money I’m spending he had better wear until it falls apart.  I mean, he needs to sleep in it.  He needs to wear that sucker year round; I want him sweating in it during our 110 dg. summers.  I’m not kidding.

Okay, I’m kinda kidding.  Kinda.  But for the leather sleeve upgrade that he wanted, I fully expect this jacket to last.  Forever and ever.

Now I just have to figure out how my sewing machine works so that I can add the new patches we will get every year.

And by figure out how my sewing machine works I really mean that I have to con sweet talk my dad or Karaboo.

Did a quick search of 1970's sewing machines and look - it's mine!

Did a quick search of 1970’s sewing machines and look – it’s mine!

 

Aside

Spoiler Alert: Transfer Time

So, BA cancelled lunch on me today.  Which I kinda expected. But, since it was work related, I guess I’ll forgive him.  Actually, he rescheduled for Monday, so, that’s that.  Oh, and at the end of the conversation he told me that he’s been saving a story for our face time.  (He communicates better face to face, so he saves up stuff to tell me!)  Anyway, now I have all weekend to wait to find out what the story is!! Agh!  Seriously, you all know that will drive me nuts!

Lee did not have the right heart cath done today.  His INR  was too high… means his blood is too thin and may not clot.  They couldn’t risk putting the cath in and having a bleeding event.  They thought about putting some fresh frozen plasma in his body to thicken up his blood; however, that would skew the results of the test, so yeah – it was veto’d.  They did a different test using his picc line.  I’ll come back to that.

He’s also developed a bump/growth type thing on his left side and it is very tender and causing pain.  He had another CT scan today to see if they could find something that was missed in yesterday’s CT scan to tell them what it is.  Nope.  Nothing showing up.  No one knows exactly what it is or how to fix it.

His potassium and sodium levels did drop, so he was able to skip dialysis today.  His nephrologist wanted to give Lee a break while he could.  His BNP (the test that tells you if you are in heart failure or not) dropped significantly   From 4000 yesterday to 2900 today.  Or maybe it was 2400.  Anyway, it went down.  Keep in mind, in a normal person, BNP measures 100.  You read that right, I didn’t miss a zero.  Normal is 100.  Lee is 2900.  Or 2400. Take your pick.

Back to the right heart cath that didn’t happen.  I don’t know what the results were.  All I know is that this afternoon mom texted me that Lee is being moved to UNTSW.  UNT Southwestern Medical Center.  Per their website “UT Southwestern is widely recognized as one of the nation’s leading heart disease treatment and research centers, dedicated to providing the very best care and committed to the discovery of new knowledge that will help tomorrow’s patients.”  Personally, I don’t care about tomorrow’s patients.  I just care about today’s patient.  He should be transported this evening. They are taking him via Care Flight, the air ambulance, cause they can’t risk the ambulance getting stuck in traffic.  The good news is that UNTSW really IS a leading heart facility and they have more experts to help Lee.  The bad news is that it is in Dallas.  I live in FW.  For those not familiar with the D/FW Metroplex, and especially those that live on the East Coast, that’s an hour drive in no traffic.  An hour and a half in rush hour, easily.  Everything is bigger in Texas, to get from one side of the Metroplex to the other is like driving the entire state of Rhode Island from north to south.

Okay, I made that up.  But, I bet if you map it, you’d find that I’m pretty darn close!

On a totally different note, I did get the house cleaned today.  Well, the parts of the house that I use anyway… I didn’t do T’s bathroom, which since it is the guest bathroom, I probably should have, but I cleaned the toilet earlier in the week, and he can pick up his own dirty clothes and wipe down the counter and sinks.  Plus, I don’t have any company coming over… so no one will notice! But, I did get the dusting, sweeping, vacuuming and mopping done.  That makes me feel happy.  Yes, I’m weird.

Lastly, I refuse to blog this weekend.  But, since I’m addicted to you guys, I will check in and read what you blog!  Oh, and thank you guys so much for the outpouring of support and love and prayers!  I may not always respond – but I am hearing you!!

And, because I like to include pictures, here are some of Lee.

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Lee at Christmas this year.

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Lee and our sister Amy at Mr. T’s BD party last year.

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Lee in 2011 at our family vacation to Walt Disney World, before he had been diagnosed.

 

Swan’s Song

Today Lee had a CT, as his labs keep showing that he has an infection, but he is on antibiotics and doesn’t have a fever.  They didn’t really find anything.  He went down and had more dialysis done today, since his other numbers were still high.

Friday he will have a Swan-Ganz right heart catheterization done.  The doctor will insert a small tube (catheter) into the right side of the heart and arteries leading to the lungs to measure function and flow.  (For future reference, this is really just called a right heart cath.)

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This is not the type of Swan Lee is having done…

My understanding is that his body isn’t functioning like they expect and his labs keep going up and they don’t know why.   I’m hoping that all they are doing is going to find a reason, or short of finding a reason, at least a treatment.  I don’t know.  All I know is that I know I’m tired of the ICU, and I get to go home everyday.  I feel so sorry for Lee having to be there everyday.  Not being able to even walk the halls for some change of scenery.  But, like I told him the other day, being miserable over it won’t help anything.  So, we will just keep asking for prayers and praying ourselves.  What will be will be.  My goal is to just help him and my parents out the best I can.

On a different note, my completely modest brother has become an exhibitionist.  Part of it is that he’s out of it so frequently he doesn’t realize he is exposing himself all the time, part of it is that he’s just so uncomfortable and I’m sure part of it is just the fact that he doesn’t care anymore!  All I know for sure is that I’ve spent the last two days hopping up to cover up his junk before he scared away dietary and environmental services!

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Last night T and I were in the living room and he was doing his homework… well, he was supposed to be doing his homework; however, he kept coming up with distractions.  “Hey mom did you know this?” “Hey mom…” “Hey mom what do you think about this?” “Hey mom I only have 1 chapter left.” “I wonder what other homework I have to do tonight.” “I think that I have to do this”  “I think that I should do that”.  I finally snapped back at him and, yeah… it got Tweeted later that night…

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Of course, then I had to RT it, it was pretty funny…

Tomorrow is Friday and I have a late lunch with BA scheduled, and I’m really looking forward to it.  It will be nice to get away for a bit.  Then, mom gave me Saturday off – I didn’t even ask or bring it up – but since she did, I’m planning on spending the morning with Mr. T and then the afternoon with my girlfriends.  Recharge my batteries! 🙂  Thanks for coming along on this journey with me guys!  You’ve been awesome!

That sounded like I am leaving.  I’m not.  You aren’t that lucky!

Acting On Camera

I don’t feel like blogging today – it’s been a long day.  I left the hospital today when they took Lee down for dialysis at 1:00 pm.  He hasn’t felt well in the past 24 hours, he’s just super uncomfortable and taking xanax, morphine and phenergan to help calm down, ease the pain and reduce the nausea.  His sodium count was way too high so he got a “cocktail” shot this morning to tide him over until dialysis could fit him in.  Mom texted me after I’d left that dialysis rules suck.  I haven’t talked to her yet, but I’m guessing they wouldn’t let her stay with him during the treatment.  😦  On another note, Lee has treated her much better lately, he really made her this morning when he asked about how long she’d be there and then what time she was coming back.  (Mom goes in to work early and sits with him until I get there, between 7:15 & 8:20 depending on what day it is and then she goes to work for 4-5 hours and then comes and stays with him until dad gets there.  Dad takes the evening shift.  We have it all worked out.)

So, there is your update.  It all sucks.  That’s the update.  But, he’s alive and slowly but surely making progress.

Since I don’t feel like blogging, but I do really need a laugh, he’s a YouTube clip.  Misha Collins and Jensen Ackles are on Supernatural (you know, my current Obsession!!) and they are doing a panel, and apparently someone brought an old headshot of Misha (which actors resumes are on the back of), and seeing how much it cracks Jensen up just has me laughing until tears are coming down!

https://www.youtube.com/watch?v=Yj4kn-RADME

Happy Supernatural Wednesday.  Now to cook some supper and then I have to put in a few hours at work tonight, cause I wasted time searching for a funny clip when I should have been working… but it was so worth it!!! This clip is hysterical!!!

And The Winner Is…

First off, since this is my blog, let me tell you that I’m exhausted and I really, really hate the smell of the hospital.  You know that smell, it’s not bad… it just hits you at the back of the throat and never lets you go.  

Also, my brother is super cranky.  He was cranky to me yesterday, and he’s been cranky towards mom for days now, but today, today he took home the crankiest boy in the world medal. I could hear in my head the announcer going “And the winner is… Lee!”

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I’m not very patient to begin with, but I do make allowances.  I recognized that it completely and totally sucks to, in effect, be tied down to a hospital bed by all of the lines running in and out of your body.  I can see the frustration and angst on his face that he can’t get up and walk to the toilet.  I get that it’s not ideal.  As such, I’ll give you a lot of leeway.  I’ll take the abuse and shrug it off.  Until today.  Today I snapped.  Today he was frustrated about not being able to get up to go to the bathroom.  Bed pans suck.  We get that.  But, it is physically impossible for him to get up, it sends his heart rate skyrocketing and causes the CRRT machine to clog.  We all want him to get up, but it was just not physically possible this morning.  This set him off and he went on a tirade and had him sending angry texts to mom and when he finished with his doctors were all stupid, well, yeah, I’d had enough.  

We had a come to Jesus meeting and I told him that we all sympathized and it totally sucked and yes, as much as we hate that he is going through this, I don’t know that the rest of us could do it in his place.  I told him that it was going to continue to suck until it got better and he could lay there and be miserable and make the rest of us miserable, or he could knock it off and deal with it.  It is what it is and being miserable about it doesn’t help.  Making the rest of us miserable doesn’t help.   Yes, the progress is slow.  That is all we are hearing – it’s slow, but it’s progress. Yes, we hear it everyday, and yes, it drives us nuts too, but we would so much rather heat that every single day as opposed to hearing the opposite.  

Y’all, I’m not sure what all I said, it kinda went by in a blur.  And when his nurse stepped out of the room at the end of my speech, I pointed out to him that he has excellent doctors and nurses who were doing everything in their power to help him heal and get better and out of that bed, and that they were doing it all despite the fact that he was treating them like crap frequently.

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He got silent, and when I reminded him that he had morphine if he was still struggling, he said yes this time, and took a hit.  And the next time he talked to the nurse, he was polite and said thank you.  So, I don’t know if I got through or if he just didn’t want another fast lecture! 

I’m not the best in those situations.  Our mom is better at it – the whole being patient and coddling thing.  She is great at that and has handled him very well.  I must have gotten impatient and left the line the day that genetic marker was being passed out… I just don’t have it.  I’ll nurture and have compassion… to a certain point! 🙂 

Now for the positives of the day: he was taken off of this one specific med and he tolerated the removal, he stayed stable for an hour which meant… He was removed from the CRRT machine (dialysis)!!! Yay!  This is a huge step to have him off of the CRRT.  The goal now is to last all night and then see what the labs show in the morning.  Without the CRRT cleaning his blood, we should have a much more accurate measure of what is going on inside him.  Just like in the past couple of days, his labs were all over the place, up here and down there.  So, it will be good to see how his body behaves overnight.  

Now, before we get our hopes up, the CRRT is going to be close by, as the nephrologist thinks that he may need some “sled” treatments.  They’ll hook him up for 2-4 hours a day just to help his body out.  That is the goal we are working towards – that IF he needs help, he only needs a little at a time.  

I left early to have my root canal finished, and mom said that he was stable, but that he just didn’t feel very well. 

Let me just say that I’m glad she’s there and not me.  Maybe he’ll be able to sleep better tonight and he’ll be in a happy happy joy joy mood tomorrow.  Maybe.  

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Technology Rocks!

I got my first smartphone at the urging of my boss, who told me “this way you can sneak off and get your pedicures and still check your emails, no one will know.” Technically, I can work from anywhere and the smartphone allowing me to get my emails should allow for extra flexibility, seemed like a win-win! Plus, hello? Who doesn’t like a boss that knows you that well? 🙂

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A few years ago I switched to the iPhone. I’ve never regretted it. It’s served me well, easy to use, very few issues, and really, it’s not like I use my phone for much. I can tell you that I check my emails on it about once a week, check Facebook, Pinterest, Twitter and Word Press daily and occasionally play a game.

My phone handles my calls and keeps me entertained and until last week, I had not even come close to using my iPhone’s full potential. All last week I worked almost exclusively from my phone. I downloaded the app for the cloud server that our offices uses, so I’ve been able to pull up drawings and other documents to answer questions and I’ve been able to stay on top of my emails. I’ve been able to text co-workers and delegate assignments as necessary and I’ve been able to monitor the progress of my staff (all 2 of them!) and keep them on track. Now, I have had to spend some time in the evenings on my laptop in order to do some technical writing, but that time has been very minimal. I’ve been just tickled pink that I haven’t had to lug my laptop to the hospital every day and very pleased with how well my phone has performed! This may not seem like a lot, but to be able to do 4-6 hours of work from my phone, and not having to cart my laptop back and forth is a real blessing! Technology is a wonderful thing!

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Per Wikipedia, porridge is a dish made by boiling ground, crushed or ground cereal in water, milk or broth. Huh, learn something every day…

I’m actually writing this blog in the notepad while I sit in the chair next to Lee. To my untrained eye, he seems to be doing better. His color has improved, he’s not near as yellow as he has been, and he seems to have an appetite. Just this morning he was asking about food, he wants something more substantial, and he would even settle for porridge. (OK, I’m not even sure we have ever referred to any food as porridge, but that’s what he asked for!) I told him that when we saw his doc we would ask about his dietary restrictions.  Low and behold, his breakfast tray arrived and instead of the broth that he hasn’t ever eaten, there was porridge!! Okay, it was malt-o-meal, but to me that falls into the porridge category! Apparently he was been switched from the clear liquid diet to the full liquid diet. Yeah, I wasn’t aware there was a difference either. He did eat, not a lot, but he ate about half of his porridge and had some juice and a couple of bites of fruit. So, his color is better and he ate more today than ever before. I would think he is recovering.

The flip side of that is that I’m untrained. So, you know we have reality about to land in our lap. His numbers are all over the board. Some have gotten better and we were surprised when some got worse. Overall, in the big picture, he is getting better. As his nephrologist likes to tell me “it’s small, but it is progress.”  I’ll take that and I’ll hold on tight to it. It may be small, but it is progress. That’s all that matters at this point.

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