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.

 

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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I’m Out of Clean Clothes

I live in Texas.  I only own two pairs of jeans and you can only wear them so many times before you have to put them in the dirty clothes basket.  I’ve worn them twice (okay, one of them I actually wore three times) but today I was reduced to my track pants.  Yup.  The very loud pants – the ones that announce you are coming into a room minutes before you actually arrive.  But, I paired it with a really cute top!  I totally pulled it off, but that’s not the point – the point is that I must find time to do laundry! I figure if I have time to update you, then I have time to do laundry… 🙂 I’ll have clean jeans tomorrow.

I need more of these - but it would be a waste of money...

I need more of these – but it would be a waste of money…

The weather is finally warming up, but the problem is, I haven’t shaved my legs all week and I’m still as white as a ghost because our winter had dragged on forever.  FOREVER.

Anyway… back to the real story.  If you are tired of updates on Lee, then go ahead and just hit the “like” button and move on.

Lee has responded very well to the dialysis.  This morning we found out that his kidneys are improving.  We also found out that his liver is still congested and is getting worse.  His enzyme count is going up, and going up is bad.  So, a GI doctor was called in and we talked for a bit.  He asked about this and that and was surprised that the heart condition was just diagnosed 8 months ago.  He asked about family history.  I explained to the doctor that Lee was adopted and we don’t have any information about his family history.  (Oh, by the way, for those of you that were surprised yesterday to see that Lee and I don’t look alike, he’s adopted.  We got him when he was 6 months old, from South Korea.  As another side note, I’m really proud of myself for remembering that he’s adopted, cause I can’t tell you how many times I’ve been in the doctors office with him and when family history comes up, I start to list off medical issues in the family and he looks at me and goes “I’m adopted”.  Or, when I’m alone and filling out my own paperwork, I can’t tell you how many times I have to stop and tell myself “No, heart issues don’t run in the family, Lee is adopted.”  🙂 I don’t refer to him as my adopted brother, because to me, he’s just my brother.  Plus, it’s really fun to mess with new people “don’t you see the resemblance? ” or even better, and yes, my sister and I have done this “Mom had an affair with the milk man, but don’t say anything, dad doesn’t know.” )

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Okay, where was I?  GI doctor.  He ordered some tests, some blood work and a sonogram.  I’m sure we will have the results tomorrow.  We also saw the Infectious Disease specialist today.  Lee seemed to be running a fever – and apparently it’s very hard to run a fever while on dialysis.  I wasn’t aware, but the process of removing, cleaning and replacing the blood, it cools it down.  Lee is under several blankets and a bear hug blankets – which is pretty cool, it is a blanket of tubes and hot air is blown into the tubes and it “hugs” the body to help it stay warm.  The ID doc says everything looks okay, but they are going to monitor Lee, just in case.

Lee is still in a lot of pain, and one of his doctors pisses him off beyond belief, but that’s the doctor that comes in and presses hard on his belly every morning.  That would upset me, too!  Today he slept a lot today, but when he did wake up, he was very lucid and was able to have a conversation with all of his doctors.  He is drinking now, and the nephrologist is very happy with the urine output – while minimal, he is producing some and that is a good thing!  Lee also requested some fruit, grapes specifically.  When his surgeon came in we asked about that, and he cleared Lee for the fruit.  We were able to have nutrition bring up a fruit platter and Lee ate several bites.  This is great news as it relates to his progress.

Not the actual fruit plate... but it is pretty darn close!

Not the actual fruit plate… but it is pretty darn close!

Right now all of his doctors are thinking that the liver problems are related to his heart condition.  Once the tests are run and everything else is ruled out, then they will do a heart cath and monitor the blood flow on the right side of his heart.  The results of this test will probably mean that the transplant team will be notified and Lee’s file will be pulled and they will start reviewing the tests.  But, that is still a bit in the future, so I’ll save talk of transplant for later!

Happy Friday everyone!