Reblog: Then He Kissed the Back of my Hand

Apparently I found the limit on the number of times WordPress will let you reblog one of your own blog posts… Today is the 3rd anniversary of my baby brother’s passing, and so I took some time this morning to re-create the story to share, spend some time with my own thoughts, and just reaffirmed how fast life can change and how important it is to stop and spend time in the moment.

Love you all, and now back to the story.

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My parents always knew that they wanted to have 2 kids and to adopt.  So, after me and my sister, they began looking to adopt.  They wanted to adopt a special needs kid, provide a home to a child that might be overlooked.  They were aware of their own limitations and knew that they wanted a child with a physical handicap.  We took sign language classes together for a while when we thought we were getting a deaf sibling.  That fell through and in the end, we found out about Lee.  Lee had a little red triangle that appeared on his forehead above his nose when he cried and got upset.  The Koreans considered that a handicap.  It was meant to be!

Image<a Lee at Universal Studios, he’s so strong, he is lifting up the A-Team Van with one hand!

His Korean name is Man Ho Ha and we picked him up from Dallas airport when he was 6 months old.  He was ours from the time he was a month old, but we couldn’t get him until he was 6 months old.  It was amazing.  A Korean woman had traveled with him and several other babies and dropped them off at other stops, and Lee and one other child, a little girl, were her last stop.  We passed him around our arms while at the airport and just couldn’t keep our eyes or hands off of him.  It was a memory that will always stay with me.

He was named Jayman Lee.  Jayman is spelled slightly different from normal so that we could incorporate his Korean name in there – and Lee is a family name.  We just called him Lee.

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Through the years, as a good older sister does, I tormented him! I curled his hair and my other sister dressed him up.  Good Times!  Since there is 10 years difference between he and I, we were pretty close.  When he got older, I always took him school supply shopping.  We had season passes to Six Flags for many years.  Apparently, when he and I were younger, I thought I was also his mom.  He would bring home papers from school that were subpar and needed a parents signature, in order to keep him out of trouble I would sign his papers.  Then mom and dad would never know that he didn’t do well.  Yeah, uh, they found out anyway.

It was 10 months ago that he was diagnosed with viral cardiomyopathy.  You have followed my journey with him here on my blog.  After the initial diagnosis, he did good.  We had a few set backs, but overall, he was doing really well managing the condition.  We did have a few scares along the way, but he always pulled through.  In fact, our aunt commented at a family function “you don’t look sick.”  Yeah, she’s that aunt.

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A little over a month ago he started not feeling very well.  His meds were adjusted, but he knows is body, and he knew when it was time to go to the ER.

He never left the hospital again.

This kid was amazing.  He took everything that was thrown at him.  We didn’t think he would survive the gallbladder surgery, but he did.  Then he was transferred to UT Southwestern, which is one of the best hospitals for cardiovascular issues.  He seemed to be getting better, but then stopped.  I can’t tell you how many times we were told “he may not make it through the night” but he did.  When he went in for his LVAD surgery, again, we knew he might not survive, but against the odds, he did.  I’m so very proud of my brother for all that he went through and how well he handled it.

There was a Tuesday that I went to visit him in Dallas.  He took my hand and held it.  He told me how much he loved me and how glad he was that I was his sister.  He said that he knows how much crap I put up from him over the years and he was so glad that I was always there to support him.  He also mentioned how thankful he was that I could spend so much time with him in the hospital.  He acknowledged that it couldn’t have been easy for me, but that he wanted me to know how much he appreciated it, and me, and how very much he loved me.

Then he kissed the back of my hand and sat there holding my hand.

That’s the last conversation I had with my brother.

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Lee with our nephew

That night he had to be put on the ventilator.  A week later he coded and slipped into a coma.  This Monday, he had a CT scan and we were told that there was swelling in the brain due to damage and that the doctors would not be able to fix that.

It was time.

This Tuesday we gathered by his bedside.  Mom, dad, my sister, my grandmother and I.  We held his hand, kissed his head and said our goodbyes.  When we were ready, we called in the doctors and nurses and they turned off his machines and left us in peace.  We stood by and talked to him, held his hand and we cried as he passed away.

Lee transitioned peacefully to Heaven surrounded by love.  We let him know how much of a blessing he was to us, and that we were letting him go.  He didn’t take long to pass, and we all knew when it happened, you could see the peaceful expression, it was so nice that after such a trying journey, he had found peace.

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Last picture of me and Lee, at the hospital

Today we have been busy making the arrangements.  Lee will be cremated and we will have a memorial service this Saturday morning.  I’ve been in contact with family and friends and have been absolutely amazed at the outpouring of love and support I have received.

Lee was well loved, and for a pain in the butt brother, he was pretty darn awesome.

Thank you all for being part of my journey with Lee.

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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Then he kissed the back of my hand…

My parents always knew that they wanted to have 2 kids and to adopt.  So, after me and my sister, they began looking to adopt.  They wanted to adopt a special needs kid, provide a home to a child that might be overlooked.  They were aware of their own limitations and knew that they wanted a child with a physical handicap.  We took sign language classes together for a while when we thought we were getting a deaf sibling.  That fell through and in the end, we found out about Lee.  Lee had a little red triangle that appeared on his forehead above his nose when he cried and got upset.  The Koreans considered that a handicap.  It was meant to be!

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Lee at Universal Studios, he’s so strong, he is lifting up the A-Team Van with one hand!

His Korean name is Man Ho Ha and we picked him up from Dallas airport when he was 6 months old.  He was ours from the time he was a month old, but we couldn’t get him until he was 6 months old.  It was amazing.  A Korean woman had traveled with him and several other babies and dropped them off at other stops, and Lee and one other child, a little girl, were her last stop.  We passed him around our arms while at the airport and just couldn’t keep our eyes or hands off of him.  It was a memory that will always stay with me.

He was named Jayman Lee.  Jayman is spelled slightly different from normal so that we could incorporate his Korean name in there – and Lee is a family name.  We just called him Lee.

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Through the years, as a good older sister does, I tormented him! I curled his hair and my other sister dressed him up.  Good Times!  Since there is 10 years difference between he and I, we were pretty close.  When he got older, I always took him school supply shopping.  We had season passes to Six Flags for many years.  Apparently, when he and I were younger, I thought I was also his mom.  He would bring home papers from school that were subpar and needed a parents signature, in order to keep him out of trouble I would sign his papers.  Then mom and dad would never know that he didn’t do well.  Yeah, uh, they found out anyway.

It was 10 months ago that he was diagnosed with viral cardiomyopathy.  You have followed my journey with him here on my blog.  After the initial diagnosis, he did good.  We had a few set backs, but overall, he was doing really well managing the condition.  We did have a few scares along the way, but he always pulled through.  In fact, our aunt commented at a family function “you don’t look sick.”  Yeah, she’s that aunt.

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Lee’s Senior Picture

A little over a month ago he started not feeling very well.  His meds were adjusted, but he knows is body, and he knew when it was time to go to the ER.

He never left the hospital again.

This kid was amazing.  He took everything that was thrown at him.  We didn’t think he would survive the gallbladder surgery, but he did.  Then he was transferred to UT Southwestern, which is one of the best hospitals for cardiovascular issues.  He seemed to be getting better, but then stopped.  I can’t tell you how many times we were told “he may not make it through the night” but he did.  When he went in for his LVAD surgery, again, we knew he might not survive, but against the odds, he did.  I’m so very proud of my brother for all that he went through and how well he handled it.

There was a Tuesday that I went to visit him in Dallas.  He took my hand and held it.  He told me how much he loved me and how glad he was that I was his sister.  He said that he knows how much crap I put up from him over the years and he was so glad that I was always there to support him.  He also mentioned how thankful he was that I could spend so much time with him in the hospital.  He acknowledged that it couldn’t have been easy for me, but that he wanted me to know how much he appreciated it, and me, and how very much he loved me.

Then he kissed the back of my hand and sat there holding my hand.

That’s the last conversation I had with my brother.

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Lee with our nephew

That night he had to be put on the ventilator.  A week later he coded and slipped into a coma.  This Monday, he had a CT scan and we were told that there was swelling in the brain due to damage and that the doctors would not be able to fix that.

It was time.

This Tuesday we gathered by his bedside.  Mom, dad, my sister, my grandmother and I.  We held his hand, kissed his head and said our goodbyes.  When we were ready, we called in the doctors and nurses and they turned off his machines and left us in peace.  We stood by and talked to him, held his hand and we cried as he passed away.

Lee transitioned peacefully to Heaven surrounded by love.  We let him know how much of a blessing he was to us, and that we were letting him go.  He didn’t take long to pass, and we all knew when it happened, you could see the peaceful expression, it was so nice that after such a trying journey, he had found peace.

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Last picture of me and Lee, at the hospital

Today we have been busy making the arrangements.  Lee will be cremated and we will have a memorial service this Saturday morning.  I’ve been in contact with family and friends and have been absolutely amazed at the outpouring of love and support I have received.

Lee was well loved, and for a pain in the butt brother, he was pretty darn awesome.

Thank you all for being part of my journey with Lee.

A Mechanical Heart

My brother has a mechanical heart.

It is weird to even just say that.  So, let me back up a bit and catch you up.

Tuesday Lee ended up being sedated and put on the ventilator.  He spiked a fever, so he was also under an ice blanket (a blanket that they run cold water through to cool the body down, sometimes ice packs are put on top of this blanket to help bring the temp down even more.).  We were told Tuesday that he might not make it through the night.

He stayed pretty much out of it on Wednesday – on purpose, they wanted/needed him to be sedated while he was on the ventilator as each time he would surface, he’d fight the vent.  Also on Wednesday his fever broke, and then came back.  And then broke again.  It was decided that they would do the Right Heart Cath, no matter what!! on Thursday.

Thursday.  Lee’s fever came back but stabilized.  The docs decided not to do the right heart cath but to just proceed with the operation for the LVAD the next day.  They did discover that he is allergic to one of the meds that the surgeon wanted to use.  And, thank God for the surgeon who was willing to do the surgery.  Since it was such a high risk operation, apparently several turned down the opportunity.

Friday.  He has his surgery today.  About five hours in we got the report that he was doing so very well!  He was still open and on the table, but they had installed the device and were watching the heart respond.  They were also doing dialysis to cleanse his blood of toxins and meds. Yay!  This is great news.

About two hours later they came back and told us that the right side of his heart didn’t hold up when they put the LVAD on, so they had to go ahead and install an RVAD (if LVAD stands for left ventricle assisted device, guess what the RVAD stands for?  You got it! Right ventricle assisted device.)  They were still doing dialysis, but Lee was doing very good and it would be a few more hours.

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The next update we got was right at 2 hours later and he had survived the surgery!! I had left the hospital by that time and dad’s text finished with “Victory!” They will monitor him closely for his vitals to stabilize and for any internal bleeding.  Mom and dad got to see him briefly, and mom said that it was amazing, his hands were warm.  Lee’s hands haven’t been warm for ages, with the lack of blood flow, they were always cold.  So, if nothing else, we have physical proof that he has blood pumping though his body.

Now, he’ll have a very rough weekend, but, what a blessing.  He will wear a couple of devices to keep his heart pumping and he has to plug in to recharge every night.  But, having batteries to recharge means that he gets to come home! No, we don’t have a release date, but if he starts to heal, he gets to come home to finish healing.

Now, I know you are all wondering, so here’s your medical lesson:

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This is an LVAD – it’s bigger than you think.

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This is the internal and external picture showing how it works. We have four fail-safes on it in case of power failure or a short circuit.

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Thanks to the Mayo Clinic, you all will be the most educated people out there!

Keep in mind, because the blood from the left and right side of the heart can’t co-mingle, Lee will have two of these in his chest pumping his heart for him.

Oh! And, he was approved for transplant!! He has to recover from this surgery, have two teeth pulled (they are decaying and pose a risk of infection) and has to conquer the infection he has that the doctors can’t identify (and Lee is on the four most powerful antibiotics there are and the infection is still present… What’s up with that?!?).  Once those requirements are met, then he will be placed on the transplant list. This is good news guys!

Thanks for being there for this journey with me!  I’m sure there will be more.  And, I have to tell you all about Mr. T totally wiping out on his bike, and the fact that he needed stitches, but by the time someone agreed with me on it, it was too late.  I have pictures!! 🙂 Tomorrow we are going to meet Graced By Emilie’s new baby brother, and then going to see the Broadway musical Wicked, followed by a stop at the hospital to see Lee!

Have a great weekend!!!

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.

 

I’m trying, I’m really trying

I’m trying to stay on top of everything.  I’m trying to read all of your blogs and offer up my thoughts in your comment sections.  I like the interaction.  I’m trying to stay on top of Facebook and see what is going on in my friends lives, and to like and comment as I need to.  I’m trying to get through all of my emails, both work and personal and answer accordingly.  I’m trying to check my phone frequently and listen to voice mails and answer texts, heck, I’m just trying to answer the phone!

Today it’s hard.  Lee has been in the hospital, in ICU since Sunday night.  Yes, it’s only Tuesday, but it feels like longer.  His gallbladder needs to be removed, and apparently, it is painful.  Those I’ve heard from that have gone through this have told me how painful it is, and Lee is in that pain.  It’s worse for him due to his cardiomyopathy.  And, seriously, they can’t keep him on enough anti-nausea and morphine.  When I’m in the room, the anti-nausea is the most important.  Every time he grabs the pink tub, he looks at me and goes “Sorry Kate.”  I guess it’s good that he knows he’s not allowed to puke in front of me – or at least he understands that I will puke right there next to him if he does… Is that TMI?  It feels like TMI…

Did you know that a kidney doctor is called a nephrologist? Yup, I learned that today, too.  Lee’s kidneys aren’t working.  This is vital for surgery, but after meeting with the doc it was decided that the reduced function is primarily due to his heart condition, not due to dehydration, so we aren’t going to delay surgery due to reduced kidney function.

The hardest part of this is that Lee was doing so very well.  Amazingly well.  And then past couple of months have just been one beating after another.  Gout.  Diabetes.  Gallbladder. It’s hard to see him in the hospital bed and not knowing for sure that he’ll leave it.  It’s hard to see my mom fight back the tears when we get more bad news.  It’s hard to hear my dad say that he just doesn’t think Lee has the fight left in him that he needs.  It’s really hard when I have to agree with him.

So, I’m back home after having spent all morning in the ICU with Lee.  I’m trying to get my work done – and just can’t focus.  So, instead, I’m sharing with you! His surgery is scheduled for tomorrow (Wednesday) at approximately 1 pm.  I’ll go back tomorrow morning, like today.  It worked out well, T and I left at the same time, he walked to the bus stop and I drove to the hospital.  🙂  There are a lot of issues working against him, but he has such a great team of doctors.  Several of these doctors we’ve been working with closely for the last 8 months and the new ones we’ve just encountered come highly recommend and we’ve gotten really good impressions from.  I won’t stay for the surgery, I’ll come home and wait to hear from our parents.  And pray.  I’ll be doing a lot of praying.

On the plus side – Erica had her baby today!!!  Graced my Emilie now has a little baby brother, Landon.  8 lb. 4 oz. 20″.  The funniest part is, last night we all made predictions on the size of the baby on Erica’s FB… and she was spot on!  Her prediction was the right one!  I think she had inside information…

You Can’t Make This Stuff Up!

I know I just blogged yesterday and I hate to flood your in-box or your reader with too many postings, but dude…you can’t make up the stuff that happens in my life. I have to start from Monday night. 

I was just uncomfortable, so I announced that I had to take my bra off.  Yes, I make random announcements like that.  Mr. T responded that he didn’t have that problem, but “I know how to take one off of a girl with one hand.”  After a momentary pause, I just looked at him and said “I don’t need to know things like that, I really don’t” and then continued on my way. 

Tuesday we got up, I took Mr. T to school early for math, came home and worked for a few hours, left for a lunch meeting with Nacho.  We went to Macaroni Grill, and, I’ve never really been impressed by that place.  I was impressed that while they had white linen napkins as standard, they did have a black napkin available when I asked (because when you are wearing black slacks, you don’t want all of the lint from the white napkin).  The food was okay, but the company was exceptional.  So, I was happy. 

Tuesday afternoon I had a dental appointment.  I was having a tooth extracted.  Several dentists told me that it would be okay and extraction was my best option.  Okay, no problem.  I can do this.  As much as I hate work being done in my mouth, I’ve been told this is all standard.  Being a single mom, I am use to having stuff done and having to continue on with my day.  I did not make other arrangements. 

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My tooth was not near as happy as this tooth is…

I sit in the chair; they want to take more x-rays, because something doesn’t look right.  Whatever.  Are you sure you can’t use the ones that my dentist sent over? Why, yes you can.  Good.  Let’s get this thing started.  Now, my phone has been quiet all day long.  Until they started working in my mouth and then it blew up.  I’m telling you, my pocket was vibrating almost the entire time I was in the chair. 

I will admit that the team did a great job.  They really did a wonderful job.  It’s not their fault that my tooth was up in my sinus cavity (not sure how that is possible).  But they sat my chair up and I told them that my phone was blowing up during the procedure.  They laughed and told me that they noticed!  We went over my post-op do’s and don’ts and I said I needed to just sit here for a minute.  I took my phone out and noticed a call and voice mail from my boss (that can wait) and two calls from my mom along with a text from her “Answer your phone” (that can’t wait).

Now, it drives my mom nuts that my phone is always attached to me, but man, when I don’t answer her calls she tends to get testy.  She tends to call back over and over until I answer.  For example, when I’m on the phone and she beeps in and I silence her – she calls right back – which makes me think something, is wrong.  When I didn’t answer and she sent me the “Answer your phone” text, I assume something is wrong.  I stepped away and called my mom.  And, this has to have been one of our best conversations. 

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My phone was not as happy during this conversation as this phone apparently is…

Mom: I’m reading your sister’s poem

Me: Okay (speaking through a clenched jaw, cause I have to hold the gauze in place)

Mom: Have you read it yet?

Me: No, I was having a tooth pulled.

Mom: Is there something you know about her that I don’t?

Me: No

Mom: Have you read the poem? Well, I guess if you were having a tooth pulled you probably haven’t read it yet…

Me: No, not yet.  So, is she suicidal or pregnant?  (I was literally reaching for the two worst things in the world that I could come up with)

(Pause)

Mom: pregnant

(Bigger pause)

Me:  I gotta go pay for this and read my emails.  I’ll call you back.

I paid my bill – which was the high end of the estimate due to the extra work – and went to Walgreens to turn in my script for pain meds.  I sat down and pulled up my emails.  Found the poem from my sister announcing that she’s pregnant – 6 months along to be exact – I had to have my friend Erica do the math for me.  I just couldn’t think straight. 

It was time to call my mom back.  We talked a bit.  I got home.  Took a pain pill, changed my gauze, texted those I needed to and then called my dad.  We talked a bit and at the end of the conversation he offered to go pick Mr. T up for me.  What a blessing.  Mom called to check on me and asked about food… I told her there were left overs for Mr. T and I just wasn’t going to eat.  She said I needed a chocolate malt and she’d call dad and have him pick me up one when he got Mr. T.  Okay, that was pretty darn awesome.  I’m glad mom made me have one and I’m so glad dad picked it up.  That was the perfect dinner. 

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Best dinner ever

Let’s recap:

  • My 14 year old can undo a bra with one hand,
  • I had a tooth extracted and am in considerable pain
  • My sister is pregnant. 

It is now 24 hours later and I’m exhausted, and taking my bra off again.  The wire is poking out, so on top of everything, my bra is broke.  Go figure. 

Yes, all of that just happened, and all in a 24 hour period.  I told you that you couldn’t make up the stuff that happens in my life! 

 (As an extra note – I took my brother Lee to his cardiologist appointment today.  Said he is looking and doing good.  We are in a holding pattern, not changing anything, waiting for his surgery to implant his defibrillator in April. It was a very positive appointment and they said that Lee is doing great.)