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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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 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.