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!”

Image

 

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.

Image

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.  

Image

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? 🙂

Image

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!

Image

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.

Image

Listening Skills

Okay, so we all hear what we want to hear, and sometimes what we hear isn’t what was said. And sometimes, we just flat out don’t hear it correctly.
Dad and I both heard the same thing, at different times, so that at least makes me feel better that I’m not operating in the “hear what you want to hear space”. We both understood the information to mean one thing, and the reality is apparently totally different…
I was under the impression that a good portion of the tests and labs being run were to help get Lee better and a side result was that this would help get him on the transplant list.
Boy, I could not have been more wrong.
Mom took the early morning shift yesterday in order to catch all of the doctors. I had volunteered so that she could get some sleep, but she wanted to be the one there when the docs came in and I totally respect that, I would too if it was my kid in there! I came in and it didn’t look like good news, but operating on the cloud of information I had, I wasn’t prepared, none of us were, actually.
As of right now, everything that is being done is not to help get him on the transplant list, but to just help him survive. To try and keep him alive.
His liver enzymes are looking better, meaning they haven’t gotten worse. His kidneys are doing worse, the numbers are a bit better but that is due to dialysis, not because they are functioning in their own. He is running a fever so he does have an infection somewhere in his body. They have him on antibiotics and will take cultures to see if they can identify who, what, when and where. Okay, they don’t have to identify all of that, it just sounded good!
I know that most of this information you don’t need, but in addition to using this blog as a cathartic release, this is a good spot to document and record Lee’s journey. I do have to laugh sometimes, because I will anguish over my Facebook status update, making sure I only put specific information out and try and keep it as positive as possible.  I need to keep family and friends updated and honestly, FB is just much easier than trying to email and text and call everyone, but not everyone needs to know the nitty-gritty information.  So, aren’t you guys the lucky ones?!?! 🙂
listening skills

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.” )

adoption

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!

I Learn Something New Everyday

Today I learned about dialysis.  I’ll be honest and let you all know that I really didn’t want to learn about dialysis.  I knew about it vaguely, in the back of my mind, but it was never something that I wanted to actually know about.  Especially since I’m learning about it due to Lee.

I’m sure I mentioned yesterday that his kidneys weren’t working properly, and the goal was that once the gallbladder was removed his kidneys would be able to start processing and filtering his blood.  I may not have mentioned that the gallbladder had been seeping, leaking into his body, and his liver was congested.  The doctors did mention that his insides were goopy, not the most medical of terms, but accurate nevertheless! Since his heart hasn’t been beating very strongly, and the seeping of the gallbladder, congestion of the liver and the kidneys not working, he has some goop in him.

We found out early this morning that his kidney function had not improved, had in fact gone down some.  So, dialysis was the next step.  Now, normal dialysis is where you go in, sit in your chair and they hook you up to the machine for several hours and your blood is cleansed.  (Okay, there are five different types of dialysis, and I’m not going to get that technical.) This process would be too hard on Lee’s body, it wouldn’t be able to handle the stress of the procedure and his blood pressure wouldn’t be able to maintain.

Lee will be getting Continuous Renal Replacement Therapy.  CRRT is much more gentle than regular dialysis.  Instead of doing it in a couple of hours, they will take 24 hours and more to clean his blood.  This is a very slow and gentle process, and for ICU patients, it is the preferred method as it allows the doctors to continue to treat everything else at the same time without having to worry about waste product and fluid build up from the failing kidneys.  Lee has his own machine in his room and he’s going to be hooked up and monitored 24/7 while he is going through this treatment.

In order to undergo the CRRT, Lee had to have another procedure done today – he had local anesthesia and they installed a port.  His blood work came back with indicators that the port they wanted wasn’t going to work, so they have installed a temporary port.  When the nurse told us that was what they were doing, mom and I looked at each other and were like “that works for us, as he shouldn’t be on this long enough for the temporary port to wear out.”.  As they were getting ready to take Lee down to have the port installed, mom asked him if he needed anything else.  He looked at here and nodded and replied “I need the doctors to quit finding stuff wrong with me so that I can go home.”

We are right there with you Lee.  Right there with you!!

As with everything, there are risks.  As such, I’m not going to Google it.  You know how I feel about that (Google Is Not Your Friend!).

Today, during one of his lucid moments, I got in for a picture with him.  He wasn’t all that pleased… 😉

Meet my brother, Lee.

Meet my brother, Lee.

Quick update on today’s surgery

Ok, my Word Press is acting up, and I’ve resorted to doing this on my phone.

First off Kari, it won’t let me comment on your blogs, so I want you to know that I hope it works out for you guys, either with moving or for things to improve at his job!

Secondly, thank you to everyone for their outpouring of support. I’m not usually a needy person, but my baby brother is like my son. With the 10 year age difference, we’ve always been close. It has been hard to see him going through this. His life is not what any one should go through, much less a 28 year old.

Today’s surgery was successful. This morning we were told that his kidneys were shutting down even more and so we really needed surgery to go well. I must tell you that he had a great team of doctors and nurses and staff. I mean, an awesome team. We stayed with Lee until the very end, riding down the elevator with him and then split ways at the OR. We were very blessed and the OR director came and got us out of the waiting room and took us to a private room. Me, dad, mom and Grammy Skeeter (mom’s mom). We were notified that the anesthesiologist said Lee was doing good and then an hour later we were notified that he had come through. We were back in his ICU room just minutes after he was. Again, let me tell you that he had a great team!

Once he was settled in his room, Grammy Skeeter and I left. It would be several hours before he really woke up. And I figured mom and dad could use some time together and with him.

It was so very emotional, and I will admit that I cried on the shoulder of the OR director, but I just love her and she took the tears in stride! I was okay until mom and dad shed tears! Well, I was kinda okay. Lol.

The road of recovery from this surgery will be up and down, and we still have his heart condition, gout and diabetes to contend with, but it feels good to have this part over with. I texted mom a bit ago and she said that he was starting to stir and that his color looked better.

I’ll go sit in ICU with him tomorrow morning and hopefully my mind will settle and I’ll be able to get more accomplished!

Thanks again for all of the prayers and support, I just wanted to give you a heads up that all went well and we are very happy right now. 🙂