Hal A. Lujah

Latest Followers:

Enoch Randy ArkansasHermit bitemore Gfotwo pat wilson screminmimi Kavika Larry Hampton sixpick Dowser Jerry Verlinger

Hypoplastic Left Heart Syndrome

By:  Hal A. Lujah  •  Health  •  3 years ago  •  30 comments

Hypoplastic Left Heart Syndrome

Yesterday, my fifth grandchild was born.  It has been a very sobering pregnancy, as he was diagnosed early on with Hypoplastic Left Heart Syndrome, affecting his heart and aorta.

By early evening on the day he was born, he had already undergone two surgeries.  One was done in utero, to implant a stent to increase blood flow through his heart.  The second was done right away after his birth to correct the placement of the stent, which had moved since being placed.

 

Not that he has any say in the matter, but he has been a real trooper so far.  Things are not going well at the moment, and he is medically paralyzed to reduce the strain on his heart.  His lactate levels are way too high, meaning that not enough oxygen is getting to his organs.  The hope is that another stent can be ballooned in place to open the hole necessary for increasing blood flow through his little heart.  The awesome doctors caring for him will proceed with that goal once tests come back to confirm that the problem isn't related to his brain functioning.

If all goes well, and the lactate condition is neutralized, at eight weeks he will be undergoing a heart bypass surgery.  There will be more surgeries to follow throughout his life, as his body grows and old repairs become necessary to update.

Many thanks to the doctors and surgeons whose skills are extending his life, as well as the social services that are essential for him to see another day.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

10/21/15 Update:  Lactate levels have steadily decreased overnight (a good thing).  Currently they are at 4.4, down from a high of 16.  Normal is around 2.  Grandpa is happy. 

10/22/15 Update:  Lactate level down to 2.4.  The EEG monitor is removed from his head, and the hope is that his nutrition program can begin in earnest.  He's gained weight because he is filled with fluids, and they will try to get him down to his birth weight with medications to get those fluids out through urination.  He's still under medical paralysis for the time being, and on about ten different medications for blood pressure, pain and sedation.  He had an emergency surgery to open his chest up and reduce the strain on his heart, and that incision remains open.  The biggest concern, as I understand it, is that closing the incision may ultimately increase pressure on his heart.  They are planning on sewing his up as soon as possible, but his lactate level has to reach and remain at 2.0 for a few days before they will close him up.  The medical staff has been very impressed with his endurance thus far.

I also learned today that the in utero surgery he had to place the first stent was 100% unsuccessful.  Apparently, the stent was placed outside of his heart, but the echocardiograms made it look like it had been placed correctly inside of his heart, and his blood flow somehow increased substantially after the procedure making it look like a success.

Thanks to all of you who have taken the time to read and comment.  This has been a terrible ordeal for everyone, but none moreso than my new grandson.  It also happens to be his mother's birthday today.  She has certainly had better birthdays.  Unfortunately, because it was a c section, mom never got to see him while he was conscious.  Dad got to see him conscious for a short time while mom was being sewn back up, but the difficult job of fixing him began right away.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

10/23/15 Update:  Things are improving, and he is actually getting his chest closed today.  His color is starting to come in and the swelling continues to go down.  Some of the meds have been reduced as well.  The staff made mom a hand print stone for her birthday, and he got his picture taken with some Michigan athletes and a signed hat!

 

 

 

 

 

 

 

 

 

 

10/25/15 Update: Things continuing to improve.  Swelling is down, and he is almost down to his birth weight.  He is slowly coming to, but still sleeping a lot.  He's moving a little now, and no crying yet, so hopefully that continues and he is not colicky on top of everything else he is burdened with.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 10/27/15 Update:  The patient continues to improve, and is doing baby stuff like a little crying, yawning and sneezing.  Today is the first day that mama has gotten to hold him.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

10/31/15 Update: Had a rough night two nights ago - his heart rate abnormally shot up for a couple hours, and they weren't sure why.  It was determined later that too much diuretics were administered to make him pee, and his nutrients and electrolytes weren't replenished fast enough to balance it out.  He also got Harlequin syndrome, with jaundice on one side of his body and redness on the other side, which apparently isn't too serious.  As a result of being treated with an ultraviolet blanket, he is a glow worm for Halloween.

 

 

 

 

 

 

 

 

11/03/15 Update:  Doing great!  Down to one IV pole with only 2 meds drips and his feedings (down from 3 poles with 15 med drips.)  He's developed a small blood clot on his leg so he will be on blood thinners for 6 weeks.  He's slowly coming down on the breathing machine and they hope to have him in general care in a few days. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

11//04/15 Update:  It was a bad night.  His heart rate got extremely high, and he was given three high doses a medication to stop the top chamber of his heart from working so hard.  A couple hours later, his heart gave out and he went into arrest.  They finally got a heart beat and pulse after several heart compressions and using the crash cart.  A breathing tube is back in and an emergency catheterization was done to monitor his blood pressure 24/7.  Back on a morphine drip, and a whole new round of testing is in order.

11/11/15 Update:  I am happy to report that the patient is doing excellent.  The night he coded, it was due to another bad reaction to medicine.  Yesterday, he got his stiches out, and he is IV and breathing tube free.  He's doing so well, that he's been moved out of NICU and into General Care, and the plan is to actually send him home this coming Monday.  I made the trip to Michigan to see him last weekend, and was pleasantly shocked to see him doing so well, and to be able to hold him.  The big concern now is his upcoming bypass surgery at eight weeks old (right around Christmas, unfortunately), which will put him back in the hospital for a likely extensive recovery.  Mom has been sleeping at the Ronald McDonald house across the street from the hospital, but aside from that she's spent nearly every waking hour since his birth in his room and by his side.

 

 

 

 

 

 

 

 

9/20/17 Update:  Tomorrow is Grayson's third planned surgery.  Today he is undergoing a cardiac catheterization in preparation for the surgery.  He has been doing exceptionally well throughout his first two years of his life.  Cranky at times, but far exceeding the expectations given his condition.  In fact, it wouldn't be possible to tell the difference between him and his peers unless you saw the scar on his chest.  He still has a long road ahead of him, filled with a lifetime of complicated and expensive medications, and limitations on physical activity.  Though his heart is still much smaller than normal, it has been reengineered to maximize efficiency, and it will hopefully provide for him throughout his natural life.  Should things not go that way, he would need a heart transplant at some stage in his life.  I don't like to think about that, as I read a terrible story a few weeks ago about a boy who had a heart transplant for the same reason.  Sadly, the boy collapsed on the first day of school and passed away, even though all indications were that the surgery had been a complete success.

It should be noted that lifetime insurance caps are a real concern for parents of kids like Grayson.

As a side note, I was sad to see that all the photos from this blog have been removed since I last visited.

9/21/17 Update:  The surgery has been called off because it appears he may have an infection.  It will have to be rescheduled, soon if the fluid found in his lungs is a function of his asthma, or in the spring (beyond flu season) if tests show the infection to be viral.  He was sedated and intubated all night long, but would periodically awaken and thrash around, taking 3-4 people to hold him down while more sedatives were administered.  He is fighting his situation, which is actually not a bad sign, but this surgery is a crucial part of his future health.  As I understand it, his heart is currently doing twice the work of a normal human heart, and the surgery will basically re-plumb his system so that his heart will only have to work as hard as a normal human heart would.  This is the third surgery in his plan, and it is intended to be a permanent fix for his broken heart.  This is also a very difficult time for his mother, who is a single parent and has many hoops to jump through to coordinate having a job, and having a child who will spend weeks in a hospital.  On top of that, I have paid in full vacation plans and airfare to take all my kids and grandkids to Disney World in December.  Rescheduling this surgery may be a logistical nightmare, but better safe than sorry.

gray.jpg

Tags

jrBlog - desc
Larry Hampton
link   Larry Hampton    3 years ago

Hal,

Though tempered by such seriousness, congrats are in order grandpa. 

:~)

Much good karma, headed you and your's direction. 

 
 
LynneA
link   LynneA    3 years ago

Hope your daughter and the rest of the family are able to draw strength from each other daily as the doctors and hospital staff care for this little guy.

I cannot imagine the anxiety or stress looking to the next minute, hour or day.  You are in my thoughts as your family takes one moment at a time.

 

 
 
Dean Moriarty
link   Dean Moriarty    3 years ago

I hope all goes well. It sounds like he is in good hands. 

 
 
bitemore Gfotwo
link   bitemore Gfotwo    3 years ago

Oh, this little cutie is in my prayers, for sure! And his family, too... I can't imagine what everyone is going through at this time! Please, keep us posted on his progress!

 
 
Neetu2
link   Neetu2    3 years ago

 Wow, I couldn't post a comment here earlier but it works now. 

Hal, my best wishes are with you and your grandson. Isn't it just amazing how a fragile little being can still be strong? All of you need to stay strong!

 
 
deepwaterdon
link   deepwaterdon    3 years ago

Prayers and good hopes for the 'little' guy, Hal. Sounds like he is in good hands and I wish the very best for him, his parents, and you.

 
 
Bob Nelson
link   Bob Nelson    3 years ago

What a harrowing experience! 

How is Mom handling all this? It must be a huge load for her. 

 

 
 
Randy
link   Randy    3 years ago

Obviously my thoughts and best wishes are with him ad your entire family.

 
 
Nigel Dogberry
link   Nigel Dogberry    3 years ago

Prayers for the little guy and for the family. 

 
 
Larry Hampton
link   Larry Hampton    3 years ago

Great news and thanks for the update!

 
 
sixpick
link   sixpick    3 years ago

Hal, I'm so sorry your family is having to deal with such a terrible situation as this.  I was just looking through here and saw this for the first time.  I know you believe science and science alone will determine the future of your new grandchild, so I will tell you I will be thinking of this and hoping everything will turn out for the best for your family. 

 
 
JohnRussell
link   JohnRussell    3 years ago

Sorry to hear this Hal. One hopeful long term outlook may be that as boy grows up, medical advances for successfully dealing with his problems will be ever increasing. I wish him and your family nothing but the best. 

 
 
Enoch
link   Enoch    3 years ago

Dear Friend Hal: How is your grandchild doing?

Is it ok with you if I keep a good thought in mind for the lad?

Enoch.  

 
 
Hal A. Lujah
link   author  Hal A. Lujah  replied to  Enoch   last year

I'm sorry Enoch, I kind of forgot about this blog.  My grandson is doing very well, and nobody would even know he has a serious heart condition now, unless they saw his chest.  Still on a complicated med regimen though, and that will probably never change.  That gnarly scar will be a chick magnet some day.  His big surgery last year went exceptionally well, and he's got his final surgery this September.  Feel free to wish him well in any manner of your choosing.

Thanks.

 
 
Split Personality
link   Split Personality  replied to  Hal A. Lujah   2 months ago

Hey what is the latest on the grandson?

 
 
Hal A. Lujah
link   author  Hal A. Lujah  replied to  Split Personality   2 months ago

He’s doing well.  His final surgery was another great success.  I just wish I had the time to see him and the family more often.

My daughter sent me a cute video of him the other day.  He loves people and makes friends with anyone.  He was playing soccer with an old man (total stranger) on the sidelines at his brother’s soccer game, and laughing it up.  I would post it here but I don’t know how to do that.

His is the quintessential case for pre-existing conditions protections and social safety nets.  Without it, only the uber rich would be in a position to keep these children alive.  His maintenance meds would cost thousands of dollars per month out of pocket for life.  These kinds of surgeries and advancements in medicine would cease to exist.

 
 
TTGA
link   TTGA  replied to  Hal A. Lujah   2 months ago

Hal,

Like Sixpick, I just spotted this one (three years later).  It's really great that your grandson is doing so well. 

 I would post it here but I don’t know how to do that.

Check with Sixpick or Raven Wing (or go to Raven's blog about it).  They both explain it very well; Six is the one who showed me how to do it.  Once you have placed the video into the MP-4 or MP-5 format, the rest is pretty straightforward.  How you get the video to that format depends on the Operating System you're using.

 
 
Hal A. Lujah
link   author  Hal A. Lujah  replied to  TTGA   2 months ago

I wonder if there is a way to do it from an iPhone?

 
 
TTGA
link   TTGA  replied to  Hal A. Lujah   2 months ago

Not sure.  I don't have one and don't know which OS they use.  Perrie or TIG might know.

 
 
sandy-2021492
link   sandy-2021492    2 months ago

Glad to hear he's doing well, Hal.  I hadn't come across this blog before.  I knew your grandson had health issues, but I didn't realize they'd been that severe.  That must have been terrible for you and your family.

My cousin, who was pregnant at the same time I was carrying my son, same due dates and all, has a son with severe congenital heart defects (tetralogy of Fallot, from her description).  Actually, this is the second child she's had who's had heart defects, so she was advised not to have any more children, as she may be carrying a mutation, herself.

Both of her sons had surgery before they were a year old.  For the oldest, surgery in utero wasn't a thing yet.  For the youngest, it was ruled out as likely to do more harm than good.  Her youngest son is now 14, and will be having a prosthetic cardiac valve placed in the next few months.

She's a waitress who occasionally gets promoted to shift manager.  Her husband has a business building fences, so his income is seasonal.  Without decent health insurance, there is no way they could have afforded all the care their son has needed, and will continue to need over his lifetime.  And even once he's an adult, he will have a pre-existing condition that will always compromise his health to some degree.  Her older son is an adult, and has employer-sponsored insurance, which is fortunate, as he continues to have occasional problems related to his own heart issues.

 
 
Hal A. Lujah
link   author  Hal A. Lujah  replied to  sandy-2021492   2 months ago

Thanks, Sandy.  I started this blog three years ago, and periodically updated it at crucial events.  I'm bummed that all the pictures I posted were stripped out of the blog.  That was not my doing.  The pictures were a bit gory to be honest.  These surgeries were extremely invasive, and he was quite the little Frankenstein while recovering.  I'd go back and find the originals, but I don't have the heart to relive those times myself.

I think I just figured out how to post a current short video though - this is my grandson on the sidelines at his brother's soccer game.  He is always trying to mimic his older brother, who has tons of energy.  The results are always like watching his older brother in slow motion.  He is a very happy child though.  Unfortunately, because of his condition he will not be playing sports when he gets older. 

 
 
sandy-2021492
link   sandy-2021492  replied to  Hal A. Lujah   2 months ago

Aww, he is just as cute as he can be.

 
 
TTGA
link   TTGA  replied to  Hal A. Lujah   2 months ago

Far out Hal.  Looks like he is really doing well.  Notice that the video is slow to stream.  They all do that, but the quality is usually good once they get going.