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.

TMNT New

New look of TMNT

TMNT What have they done

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!).

LeeRemembered016

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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69 thoughts on “A Year Later

  1. Kate, that is a powerful timeline of Lee’s journey and yours. He is so very lucky to have had you by his side and you are blessed to have had him by yours. So much love to you. xo

  2. Wow. I was not around last year so this is the first I have heard of Lee. For all the complaining we do about facebook, it really is a chronicle of the journeys we go through. And I would imagine that the comments on these posts are also very meaningful. I’m very sorry for you and your family’s loss, Kate.

  3. WOW, it has been a year. I remember this when we first met. And now seeing it all in one place is like reliving all over again. Hope you’re doing OK sorting through all this. {{{ hugs }}}

  4. Wow. As writers, we are supposed to know what to say to each other when we are moved by the things we read, but I never know what to say. That must have been so difficult for you and your whole family, I can’t even imagine. And a whole year later it probably just feels like both yesterday and three lifetimes ago at the same time. I’m so sorry for your loss, and for what you have been through. I think the person who said Lee will be watching the TMNT movie with you is absolutely right. He’s probably there more often than you think.

    • I think that is the perfect thing to say! You are so right, some days it feels like yesterday and other days it was lifetimes ago! I’d like to think he is with me and will be there watching the movie 🙂
      Thanks so much for stopping by and commenting, it really was perfect for me this morning!

  5. Kate, I didn’t know you then or know your brother… but in reading every word of this my heart opened up to you and the family. I felt your anguish, hope and concern, as well as the loss .. and more than anything an amazing love.
    I cannot express words other than to say your brother lives in you … and is also with us now in spirit. What a gift of love.
    Val x

  6. *StrongNewMe* says:

    I would have a hard time saving the posts, but if it helps you, then it’s great that you have them. Especially the pictures.

    • It was hard to go through my FB and find them all and re-read them, but I knew I had to keep them, even if I never read them again, I had to have them! (I think that I’m afraid that one day I’ll forget – and that thought breaks my heart!)
      🙂

  7. Kate, this is heart-wrenching and lovely. I’m crying all over myself for you and your family and just everything. I truly hope that your memories with your brother bring you peace and calm when you need it most. Hugs to you, my friend.

    • Thanks Emily, I really appreciate it. I loved my brother, and am holding his memories close – they have been very comforting. Thanks so much for your kind comment, I’m taking the hug and feeling very blessed right now!

  8. I’m sorry that you had to shed a few tears with this process, though its clear how much you adored him. Thank you for sharing those!! I’m sending you giant hugs!!

  9. Oh Kate, I’m so sorry! It was so sad reading these posts and following your journey, so much seemed to happen in such a short amount of time, must have been such a hard time for your family. Sending you lots of hugs xxxxxxx

  10. I hope time has helped and continues to help you deal with the loss of your brother. I’m sure going through these facebook posts was not easy for you.
    I can only imagine that your brother would be very proud of you and happy for the way you have honored his memory.

  11. I am so sorry. Losing someone is very surreal. This entire post gave me chills, because so much of what you wrote I was experiencing at the same time last year with my step-dad. What I learned with his sudden passing, was that it is nearly impossible to wrap your head around the idea that someone is gone. Also, that death is a very personal experience. Each person responds differently and no one fully understands. I’m sincerely sorry for your loss.

  12. OH Kate, that was a hard read. There was so many glimmers of hope through out. It makes me sad when our loved ones leave so soon. Do you ever feel him with you. Like do you see things or signs. You know? After my grandpa whom I was so close with passed May 6th four years ago I would see white egrets in the most random spots sometimes. He had an egret fountain in his backyard and one time I looked up and one was standing on my roof shortly after his passing. It was the strangest sighting. I have NEVER seen one stand on my roof since or before. Anyway, just curious about things like that. Sending love your day, it doesn’t get easier. He will always be with you and one day you will meet again. Thank you for sharing your heart. I want to find you on FB now;)

  13. Oh, Kate, this is a tragic story about heartache and loss, yet a beautiful story of love and family. Lee was a blessing to you and your mom just as you were blessings to him. To be loved and remembered as he obviously was and is, is something that some people don’t experience after living a long lifetime. Memories never fill the hole in our hearts left by the loss of a loved one, but they certainly ease the pain. Cherish the memories. Hugs.

  14. Reading those (again) just made my heart ache for you and your family again. The biggest hug ever is floating down south just for you. And a special one for your mom on Sunday.

  15. Maybe Lee will be at the movie with you . . . looking over your shoulders. And laughing right along with you.

    Whenever I miss my dad, I picture him looking over my shoulder.

  16. Thank you for sharing this part of your life. I know it is still very painful for you. You have brought so much awareness to so many people and I am sure people have been helped with the information you share.
    I am sending out thoughts of peace and love to you and your family today.

    • Thank you Ortsofsorts, I appreciate all of the energy you have sent, and I’ll take it today! I do hope that others have taken away information that can help them or someone they know in the future! I know that you are already familiar with it all, but I’m still not adding salt to my food anymore! 🙂

  17. Thank you for sharing this part of your journey and your obvious love of your brother. This is the wonderful part of social media, the authentic stories and people. This is so heart-breaking, but at the same time glorious, because it shows the caring, the hope, the love. Thank you Kate, this made me cry. Big hugs.

    • Thank you Donna, and while I didn’t mean to make you cry, I am glad that it touched you as he was so very special to me! I used FB at that time to get the word out to family and friends, but when I went back and compiled it, I realized what an amazing story it told and had to share this version.

  18. Thanks for sharing his last days, made me understand more about what you all went through… Sending lots of love and prayers for you and your family on this difficult day. xx

  19. Oh Kate i’m so sorry for your loss and everything you are your family went through. It sounds like it was an incredibly tough journey. I’ll bet they release the TMNT movie early up in heaven and Lee is up there watching it with a big smile on his face. Thinking of you all xxx

  20. I’m sure it was hard to relive each of those posts, it was hard reading them remembering how hard it was at the time. I can’t believe it’s been a year already. Praying for continued comfort and peace for you and yours.

  21. You made me cry. I’m so sorry- I have five siblings of my own, and one in particular with a death wish. I spent last Christmas in ICU with him, praying he would wake up. (He did- we were lucky.)
    I’ll say a prayer for lee today, and I hope you can find some solace in faith and love. ❤

    • Thank you so very much! I’m so very glad that your brother woke up! With a 10 year age difference, I was like a 2nd mom as well as a sister, so it does hurt on several levels, but prayer is getting me through today, and I’m very grateful for the one you said for Lee! Thank you!

  22. NotAPunkRocker says:

    I don’t think I had any idea about the whole story until now. So much love in your family while dealing with such pain. Thank you for sharing this with us again, thoughts and peace to you and your family today.

  23. I was crying as I read this. What a beautiful idea to recover these posts. I am struck by the juxtaposition of beauty/love and pain within this posting. words are truly so inadequate.

      • Yeah, I was surprised as well when I saw the time course of events. I know you realize this, but you will be so thankful you kept these postings. I know they feel dear to your heart.

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