Lee Was Here

For those of you who have followed my blog for any amount of time, you know that a year and a half ago I lost my (28 year old) baby brother.  

Fast forward to a few weeks ago, mom and dad were on vacation and I was house and dog sitting.  Well, I thought they had an under slab leak, as all of the sudden there was a puddle in the living room! I totally freaked out, and spent hours trying to figure out where the water was coming from.  I finally traced it back to an ice maker that is supposed to be turned off.  

However, I got the water cleaned up, the ice maker turned off and we thought all was fine.

Until the wood floors in the kitchen / breakfast room started warping.  Apparently the water had been leaking under the kitchen / breakfast nook floor for several weeks before it even made it to the living room. 

Needless to say, this Saturday morning we ended up spending time pulling up the wood panels in the worst areas.  We got a big section pulled up and hauled out to the truck and as Mr. T was rolling up the thermal barrier, he goes “Look, there is Lee”

And we all stopped – and not going to lie – I was looking for a ghost! 

Not a ghost:

Lee Was Here

Lee Was Here

Lee would have been about 17 when he wrote this on the concrete under the new floor.  It was a wonderful surprise to find in the middle of less than pleasant circumstances.  

He is still with us.  

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!).

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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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25 Songs in 25 Days – Day 7

25 Songs in 25 Days – Day 7 – A Song That Reminds You of the Past Summer

My past summer was rough.  Beyond rough.  Blessings by Laura Story was one of the songs that we played at Lee’s funeral, and while it is a beautiful song, unlike almost all of the other songs I’ve picked, I couldn’t listen all the way through!

To those that were with me last summer, thank you so much from the bottom of my heart for all of the support and love you showed.

For those who weren’t with me, here is a link to my favorite post, and a good summation of my life last year.

Then he Kissed the Back of my Hand. 

And check out these awesome people that are playing along with me:

Melanie Jo Moore

Surviving the Mad House

Life in the Wylde West

Bishop Eddie Tatro’s Study

Four Calders

 

 

It’s the End of the Year as we Know it!

Goodbye 2013 and Hello 2014.

I’m currently thinking about New Year’s Resolutions… I can’t wait to share them with you all!

Until then, I’ve decided to get on the band wagon and provide you with my Top 5 Blogs from the past year!  Whoo Hooo!  Lucky you!

Now, I do have a disclaimer.  I eliminated my very top blog as it has 2,000 more hits than the next one down… obviously not a fan favorite, just a search engine favorite!

A Supernatural Obsession

Nerd fandom

I think that this post is a hit because of the search terms; however, I’m super happy to include it because I like to share the love of the Winchester brothers.  You’re welcome.

Lessons from the Movies: The Bucket List

The Bucket List

The Bucket List

I did love this post.  Looking back, the formatting is off and I can tell that I have modified the way I blog just a bit; however, I’m really pleased that this one made the list!  I love my bucket list!

The Baby Shower Didn’t Suck

Really? You want to display and then eat a cake that is a baby's butt?  Am I the only one that has issues with this??

Really, you want to display a cake that looks like a baby butt and then expect me to eat it.  Not happening.  And if you give me a part of the cake that looks like a human leg I will personally cut off your toes and see how YOU like it!  Okay, sorry, but baby showers can be freaky things and even just posting this brings up an irrational response apparently…

Then He Kissed the Back of my Hand

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Now, this post still brings a tear to my eye.  In fact, I almost didn’t re-read this post, but I couldn’t help it.  Thanks to all of my fellow bloggers who followed me through this journey, you guys were there through the medical jargon, the laughter and the tears.  This is still my favorite post of all time.  And probably always will be.

What Does Being Brave Mean?

Bravery[3]

There are days that just making it through the day makes me feel brave.  I know that everyone has a different definition of “bravery”, and some of the items that I have trouble with you might be able to breeze right through; but the fact that I do them despite the fact that my heart is pounding out of my chest – well, I’ll take that as a win!

Thank you to those who have read my blogs, and many thanks to those of you that take the time to leave a comment.  I’ve really enjoyed meeting and interacting with all of you this past year – you’ve all brought laughter and light into my life.

Happy Birthday to my Brother

I’ve debated all morning long about writing this post.  There are several reasons not to:  I don’t want to upset my mom, I don’t know if I want to drag out my emotions and stomp all over them again and maybe others are tired of the subject matter.

So, mom, you probably should just stop now.  I’m not sure what I’m going to write, but if you must continue, probably should wait until you are off work.

These are my thoughts and emotions and I’ve shared everything else, I think that I want to share this with you, too.  And, if you are tired of the subject matter, I’ve decided that I’m actually okay with that!  It is okay if I write something that doesn’t connect with you because while I’d love to have a connection with every single person that reads this, it isn’t humanly possible.  Maybe I’ll connect with those that need to read this post today, and that is all that matters.

This morning in my prayers I said an extra one for my family today, and then I told my brother Happy Birthday and that I really missed him.  And I cried a little.  Lee would have been 29 today and after five months, it’s still hard that he is gone.  I deal really well with it on most days, most days I can see that I am getting stronger and able to handle his absence in my life, but I knew that today I wouldn’t be able to, that today I would struggle and today I will allow myself time to grieve.

It helps to have great family and friends in my life.  I’ve got a friend who is staying with me and willing to do anything, another friend that is coming over later to see me and another that told me if I needed, she would load up the kids and make the hour plus drive to be with me.  What blessings I have in my friends!  I am so very fortunate to have those around me that love and support me.

I’m very blessed, but they can’t fill the hole inside me.  They can comfort me when I cry, but they can’t stop the tears.  They can say the right thing and offer up the appropriate platitudes; however, the words aren’t a band-aid that immediately works on my heart.

Having said all of that – let me say this to anyone who has a friend that is grieving – don’t give up.  Keep showing your support, hold your friends when they can’t do anything but cry and keep talking.  While you can’t ease my pain, you make it tolerable.  You let me know that it is okay to have days where I struggle (and just as importantly it’s okay to have days when I don’t) and that there is no time limit on grief.  Whether it’s via text, phone, email or in person, the efforts that we all make towards each other shows our love.  The compassion and connection that we make with each other is what matters most in this life.  I probably won’t remember half of what you have told me, but I will remember the feelings you left me with.  I will remember that you were there when I needed you and in turn, I will be there for you.

And today I will allow myself to grieve just a bit that my brother isn’t here to celebrate his birthday and then I will celebrate that I had as many birthdays with him as I did.  I’ll play a little ZZ Top as he got me that CD for one of my birthdays and I will be okay.

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(Image courtesy of liveluvcreate.com)

If you don’t know the story, click here to read Then He Kissed the Back of my Hand.

A Single Step

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Saturday marked the 4 month anniversary of when we lost my baby brother, Lee.  Nine months prior to that he had been diagnosed with viral congestive heart failure, and that diagnosis started me and my family on a journey.  It was a journey of knowledge, of discovery, and of love.  It was a journey that frequently left us with more questions than answers and with tears of joy, frustration and eventually, of loss.

There were days when things looked wonderful – when we knew that all was going to be okay – and then came the day when we realized that things would never be the same again.

One foot in front of the other and continue on with the journey.

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An important reminder to enjoy the path.

This weekend I literally put one foot in front of the other as I continued on my journey.  My family participated in the American Heart Association’s Annual Heart Walk.  There was no greater way to physically represent this journey than to walk a mile on behalf of my brother.

Let me stop a moment and give a huge THANK YOU to those that contributed to my fund raising efforts.  There were times that I was stunned when I would get an email telling me who made a contribution.  I tried not to have any hopes or expectations, but I figured that a couple of my friends would break down; imagine my surprise when I had friends and family members that I did not expect stepping up to the plate.  I struggle to fund raise, always have, and this was not different.  My jaw dropped when I hit $100, my mind was blown when I hit $200 and I was near tears at the generosity of my friends and family when I hit $275!!  I have thanked each of you individually; however, I’m sure my words were inadequate. I can’t express to each of you how much I truly appreciated your generosity.  An unexpected side benefit was that I got to know a little bit more about some of you, as you shared your story with me and the fact that you opened your heart in addition to your wallet gave me great comfort.  Again, thank you.

Back to my journey!  Friday night the family gathered at my parents house and we had dinner and picked up our shirts for the heart walk.  We were walking with the local hospital, at which my mom works, and she had picked up our shirts and taken them home and customized them for us.

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Our customized shirts!

Saturday, very bright and very early, we were up and on our way downtown to the Stockyards.

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Go Team Lee! 🙂

From L-R: Mom, me, Roshonda holding Bella with her sons in front of and behind her, Amy holding Joshua, Dad, Sam, Mr. T, friends of Jayman and Samantha and ending with Jayman (not releasing names of the minors that I don’t have permission to!)

Before the walk started it was amazing to have people from the hospital come up to us and stop to talk about Lee.  We might not have recognized each other, but they knew who Lee was.  I had one nurse bring me to tears as she told us how much she enjoyed getting to know him while he was in the hospital.  It was a very blessed moment.

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Joshua enjoying the bounce house before we walked.

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Jayman and Samantha and their friends.

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Selfie before the race with Mr. T

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Starting line!

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My view for most of the race – 🙂

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My partners. Bella is already asleep!

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Mr. T crossing the finish line.

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Me crossing the finish line – obviously I had a hard time getting me and the finish line in the frame!

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We finished the race! We earned these muscles! And yes, that’s dad throwing up bunny ears, because we don’t grow up in our family – a thought that pleases me greatly!

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I found a train for Joshua to ride after the race – he loved it!

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Sweet! Our walk was recognized 🙂

And thus ends this chapter on my journey.  Thank you to all of those who have walked with me, mentally, emotionally and physically.  Even if I haven’t mentioned it – the support has been noticed and appreciated!

As this new chapter starts I look forward to you being there with me and I am so blessed to be part of your journey, too.

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American Heart Walk and A Mechanical Heart

As a reminder, I am doing fundraising for the American Heart Association as part of the Heart Walk in which my family is participating in memory of my brother, Lee.

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You can donate here: AHW Kate’s Page.  Thank you in advance for your consideration.  You can donate as little as $25 on line and I know times are tight; however, below is a link to when Lee got his mechanical heart.  Some of you who were with me during my journey have read this; however, now you can read it again with the perspective of all the good the American Heart Association can do!

For those that haven’t read it, you get to learn all about how a mechanical heart works!  Please read A Mechanical Heart here and feel free to let me know if you have any questions or comments!

Again, thank you so much for your help, every donation helps.