A Year Later

It has been over a year since I last talked to my brother and today marks the one year anniversary of his passing.  At times it is still surreal.  Just the other day Mr. T asked if I had seen the trailer for the new Teenage Mutant Ninja Turtle movie, and I said no, and he goes “It’s totally different.  I hate that Uncle Lee won’t be able to go see the movie with us.”  Uncle Lee did love TMNT growing up, and we’ve all seen the earlier movies a hundred times because he loved them – and yes, I hate that he won’t be here to go see the movie with us, too.

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New look of TMNT

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TMNT Old School wondering “what have they done to us?”

 

Many of you were with me as I went through this journey, and you met Lee and learned about CRRT and how a mechanical heart works! While it really feels like it took a long time, it was 9 months from start to finish and one month from the time he started having real issues until his passing.

Several months ago I went through my Facebook feed and made a copy of all of my updates on Lee, I wanted to make sure I always had them, and today I am sharing them with you.

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April 6, 2013

Keep Lee in your thoughts and prayers. The meds he was put on to help his diabetes have made him sick, he’s switching to a new med, but still has to suffer thru the weekend while the old ones work out if his system. Please and thanks!

 

April 8, 2013

Lee is being admitted to the ICU for observation and monitoring. Please keep him in your thoughts and prayers. His blood pressure is very low and there are some other issues. Thanks!

 

April 9, 2013

I’m sitting on one side of Lee’s bed and mom is on the other. I’m checking emails and watching TV and for the last couple of minutes I just keep hearing mom giggle. Silence and then a giggle. Silence and then giggle, giggle. Not sure what she’s doing, but apparently that side of the bed is funnier!

 

April 9, 2013

(Mom’s post) I am asking everyone to put our son Lee in their prayers tonight. He is in ICU and is scheduled for surgery tomorrow. There is real concern about how his heart is going to handle the surgery. Please keep him in your prayers. He is being a trouper but his heart just isn’t helping him

 

April 10, 2013

Lee is out of surgery. He did good! He gets to go straight back to his room in the ICU and do his recovery there. Thanks to everyone for the prayers and the reaching out. Please continue to pray for his recovery.

 

April 11, 2013

Lee had a rough morning and his kidneys didn’t kick start like we wanted. So he had a port installed this afternoon so that dialysis could be administered. This will be a continuous bedside treatment to slowly clean his blood and remove the toxins. This should make it easier for his body to then work on its own. Thanks for the prayers and support. Let me know if you have any questions! And he had really appreciated the well wishes that have come his way!

Last picture of Lee and I together.

April 12, 2013

Lee is much more lucid today, which helps me out, I can tell what he’s saying, lol. The dialysis is working and his kidneys look good. His liver doesn’t look so good, tho, so we are calling in a new doctor for help. As always, thanks for the prayers and support!

 

April 12, 2013

We were told that Lee’s recovery would be up and down, and despite the setbacks, we do seem to be moving forward. Lee met some new doctors today. We’ve seen the GI doc, who is running some tests and had an ultrasound done on the liver, and we’ve seen the infectious disease doc who will just watch for a few days. Hopefully we can find out if something is wrong with his liver (it’s still congested) or if the issue is heart related. He slept a good portion of the day today, so I think his body is busy healing itself!

 

April 13, 2013

Small setback today, Lee has a fever, which is next to impossible when on dialysis, so they are working to find and kill the infection. They have also played, in essence, musical IV’s and removed the art and central lines and put in a picc line. He was surprised to learn today was Saturday, apparently he lost a few days during all of this!

 

April 14, 2013

Lee’s numbers look good today and his fever broke. Those are both big checks in the win column. We are very blessed that he has such a great group of doctors and nurses looking after him.

 

April 15, 2013

To my untrained eye, Lee seems better. His color has improved and his diet has been upgraded to full liquid so he gets things like cream soups and malt-o-meal. Of course, his numbers are still all over the place, not as stable as we want, but, he is moving forward. It is slow progress, but progress nevertheless. Please continue to send your prayers for Lee, and for his doctors and nurses and us! It’s been a full week in the ICU and there isn’t an end in sight just yet.

 

April 16, 2013

Lee had a rough day, but he was weaned off of one specific med, and this allowed us to stop dialysis. Tomorrow we should have new lab numbers to review, and the CRRT (dialysis) machine won’t be far away, but we are really hoping that his body is taking over and he won’t need more than a few hours a day, if at all. He is so ready to get better and be out of the hospital!

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April 17, 2013

Day 10 in the ICU and we are still showing progress, but it’s hard. Lee is struggling with pain and aches and today he went down for a traditional hemodialysis treatment. Please just keep him in your prayers.

 

April 18, 2013

Today Lee had a CT done for pictures of his internal organs and tomorrow he will have a Swan-Ganz right heart catheterization. (They will inset a small tube into the right side of the heart and arteries leading to the lungs to measure function and blood flow.) This will help get a full picture of what is going on inside his body and his doctors work on his treatment. Prayers please!

 

April 19, 2013

Lee is being transported to one if the UNTSW hospitals, not sure which, probably St. Paul. This will provide more specialize care. Sadly, I don’t think he’s well enough to really appreciate the helicopter ride, but the Care Flight staff will take good care of him.

 

April 22, 2013

Lee’s kidneys are doing better today, that’s a blessing and tomorrow they are going to attempt the right heart cath again. Hopefully they can do it this time. Everyone is ready to know the results of that!

 

April 23, 2013

I’m taking Mr. T to Diva Dinner tonight. Against his will. Good times ahead! On another note, on paper Lee is doing better, his kidneys and liver are responding. Sadly, he’s had a rough night and an even rougher day, he’s just out of sorts and very uncomfortable. He does have a small infection that they are fighting, but otherwise, looking good. On an even better note, more depts. have signed off on his transplant, so we might be able to get his case in front of the board for review and approval this week! The LVAD is also in serious discussion.  Prayers!!

 

April 24, 2013

Lee ended up being sedated and put on a ventilator yesterday evening and then had a contrast CT done. Found nothing on the CT that required surgery & he made it through the night! Prayers do work! He has developed a higher fever, so he is currently packed in ice and they are keeping him sedated while he is on the ventilator. Please keep sending prayers for him, his doctors and staff and family. Let me know if you have any questions! Thanks!

 

April 24, 2013

Lee’s fever broke! Yay! The ice blanket has been off for hours and he is running normal. The docs plan to do the right heart cath, no matter what, tomorrow (fingers crossed!).

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April 25, 2013

On another note, Lee’s fever came back, but has stabilized. The docs have decided not to do the right heart cath and just proceed forward with the surgery for the LVAD. Lee’s condition is hour by hour, but if he stays stable, they will do this tomorrow. Blessing!!! Also, today, his file is going before the transplant selection committee at St. Pauls. Please pray that he gets approved for his heart transplant!

 

April 25, 2013

Please pray for Lee’s surgery. Tomorrow he will have the LVAD installed on his heart. This is a very high risk operation but there is a surgeon willing to take it on and we are hopeful. He’ll have a rough couple of days afterwards, but this should help him while we wait on transplant options.

 

April 26, 2013

Please keep praying for Lee. We just got a report that the surgery is going well. He is still open on the table, but the device is installed. They are doing dialysis to cleanse his blood of the toxins and meds. Should only be a few more hours. Thanks!

 

April 26, 2013

Please keep up the prayers. The right side of his heart didn’t hold up when they put the device on the left side so they have had to go ahead and put an assistance device on the right side, too. They are still running dialysis to help clear his blood, and it should be a few more hours. Thanks guys!

 

April 26, 2013

Surgery is over. They will be watching him for bleeding and stabilizing vitals. They may go back in as early as Sunday and try to take off the right side assist device. He survived the surgery! Another victory!

 

April 27, 2013

Please be praying for Lee who is back in surgery this morning due to his assistance devices. Thanks

 

April 27, 2013

Lee just got out of surgery. Had to replace the LVAD unit. Took off the RVAD but added an Ecmo to oxygenate his lungs. They are filling up. The Ecmo will basically bypass his lungs to give them time to heal. I haven’t researched that item yet! Please keep praying!

 

April 27, 2013

Well, Lee no sooner got done with surgery earlier and they took him right back in. The oxygeninator (I made that word up) that was working his lungs wasn’t balanced with his LVAD. Considering they haven’t ever done this combination of equipment before, they are paying real close attention and pulling out all the stops. Please keep him in your prayers.

 

April 28, 2013

Lee was bleeding a lot last night, so they had to open his chest again to pack it and try to stop the bleeding. They will leave it open so they can go in and repack as needed. Please say a little prayer as you read this!

 

April 28, 2013

Sunday was a day of rest for Lee and he had a pretty peaceful day. His chest is still open and packed and probably will be while he is on the Ecmo, but that has allowed his lungs to begin to heal! Thanks to everyone for their prayers!

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April 30, 2013

This morning Lee is back in the OR and they are removing all of the packing, cleaning out his chest and doing an antibiotic “Paint” job inside before they finally sew his chest up. It’s been open for a couple of days now, so this is really good news that they can close him up! The LVAD is working well and they are keeping him on the ECMO a bit longer. Please pray for a successful closure this morning. Thanks!

 

April 30, 2013

Lee made it out of surgery this morning, but he’s been rushed back to the OR due to bleeding. Please continue to keep him in your prayers!

 

April 30, 2013

Lee had a busy day. Had surgery to close his chest, was rushed back in when he “sprung a leak”. It appears that closing the chest put more pressure on the organs and machines than expected, as once they opened him back up, everything was normal. So, now his chest is open (a bit more than before) and he is packed up again. They went ahead and installed a defibrillator on his right side, just in case, but as of now, only his left side is getting assistance. Also, prayers have been answered because he is off the Ecmo and back on the ventilator. Please keep the prayers coming! It is still a very touch and go situation.

 

May 1, 2013

In the wee hours of the morning Lee was back in the OR having the ECMO put back on, the right side if his heart just wasn’t keeping up. It was a success and he is back in his room, chest open and packed up. The doctor is thinking of waking him up later today. Please keep praying for him and that his heart will hold on.

 

May 1, 2013

The doctors have taken Lee off all of the anesthesia and we are waiting for him to wake up. He needs to wake up and be able to follow some basic commands and then the doctors can go before the transplant selection committee tomorrow with a good report. Please keep in mind his chest is still open and packed and he is back on the Ecmo, and he has just been through so very much. Today’s prayer is for him to wake up! Thanks!

 

May 2, 2013

Please keep Lee in your prayers as we are still waiting for him to wake up properly. They are calling in a neuro consult and will possibly do bedside CT tomorrow. Let me know if you have any questions and thanks!

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May 3, 2013

Today’s prayer is for Lee’s liver to function properly. They think the liver is causing some of his sedation issues. So, we’d love for his liver to start working better so we can see if he will wake up properly. Today he will have another procedure and they will remove the packing in his chest, give him an antibiotic paint job and then repack his chest. We appreciate all of the prayers.

 

May 4, 2013

Just got done seeing Lee. We still need lots of prayers for his liver! He is also back on CRRT, but that’s okay, his kidneys will bounce back. Come on liver! Work! Please and thanks!

 

May 5, 2013

Please keep praying for Lee’s liver! I talked to the nurses and they said we can post Get Well cards for Lee in his room. If you need an address please message or text me. I think he would enjoy hearing us read them to him!

 

May 6, 2013

This morning Lee has some GI bleeding issues that they are working on, and he is going to have a CT scan done soon. Please pray for the healing of his body. Let me know if you have any questions, and I’ll update you when I have more info! Just keep sending up the prayers!

 

May 7, 2013

Thank you all for your love, support and prayers. Today we released Lee from life support and he had a very peaceful transition to Heaven. My family and I are so grateful to all of you who have said prayers, thank you very much from all of us from the bottom of our hearts.

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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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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!