Thursday, October 17, 2013

What To Say...

... when you don't know what to say.

I haven't been updating the blog, but have kept in touch with those who have their email enabled.  I'm still not sure how to explain everything that has gone on in the past 28? days.

When Michael ended up in the hospital this time, with a second clotted pump, he was told he wouldn't be leaving without a transplant.  He was upgraded to 1A status and a heart did come available pretty quickly, but was rejected as unsuitable due to the suspected trauma that made it become available in the first place.

Having a pump that was clotted and not functioning properly was an issue that was causing problems and his kidneys were at risk.  In order to try to spare his kidneys, as well as the destruction of his red blood cells, his pump was turned down to nearly minimum speed and something unexpected happened... he improved!  Within a few hours, he felt better and his lab work was showing good results.  With this new and unexpected occurrence, Mike decided to challenge them and see if he could have the pump taken out.  The pump had been turned down on Thursday, September 26th.  They told him if he made the weekend without a crisis, they would do further testing to see if his heart function (ejection fraction) had improved.  He did 52 laps around the floor, just to test it.  They finally told him to ease up, even if he wasn't breathless, or feeling bad.  I posted a photo of him just prior to having the Swan-Ganz inserted to monitor his heart function.

When this whole thing started, just before the balloon pump, or first LVAD, his ejection fraction was about 9%.  With further testing, his heart had improved to around 27%, which is still a low-functioning heart, but had shown some improvement.  Due to the continual clotting issues, they made the decision to remove the second pump.

He is managing to hold his own and is wearing a LifeVest (defibrillator) just in case he needs it.  They have discussed implanting one, but will wait and see how he does, before cutting on him again.

Clotting continues to be a factor and further hematology is being investigated.  He did show a protein C deficiency in February, but since that was done during a clotting crisis, it's inconclusive.  Now that he's on Warfarin, it can't be tested with any accuracy.  We are on hold, waiting to see what might show up.

Wednesday, October 16th, he came home!  Sunday, October 20th, will be his 42nd birthday, one we weren't always convinced he would see.  Looks like he just might be celebrating that one after all.




This is a lousy cell phone photo, but I think you can get the mood.  He was glad to be home and was finally able to get some much needed sleep!





   

41 comments:

Betsy Adams said...

So glad to hear that Michael is home --and seems to be doing well. Happy Birthday to him. Is Michael married? Kids? I hope so --since he needs people who love him in his life....

I can only imagine how hard this has all been for you all.. God Bless.
Hugs and Prayers,
Betsy

Nellie said...

What wonderful news, Ms. A! I continue to have Michael in my prayers, as well as all the family during this crucial time.

Hugs,
Nellie

Cindy @ Dwellings-The Heart of Your Home said...

So glad Michael is home and I pray things continue to look even brighter! Happy Birthday early!!!!
Blessings,
Cindy

TexWisGirl said...

each time you left a comment, i said a prayer that your miracle was continuing. i am SO glad he is home!!!

Nikki Thomas @ Furry Bottoms said...

WOW. It is almost like the foreign things put in to HELP his heart was actually keeping it from helping. That's so weird. And now that you've mentioned Michael's age, I'm humbled. I will also be 42 this year. I am so happy he is home and I hope things continue to improve. He is in my constant prayers!

mama .bonnie said...

Praise the Lord!! This is such wonderful news, there are tears in my eyes! A very special Happy Birthday to your son! And a prayer of thanksgiving is being lifted for him, you, and your family!!!

lotta joy said...

I want to say ROAR!! In a loud, grizzly bear voice!

You NEVER know when something that is supposed to help, is the cause of things getting worse!

Terri Buster said...

He looks happy to be back at home! I am glad to hear he is doing better and I hope that everything continues to improve. Prayers!

Karen said...

He looks terrific... and now maybe Mom can get some sleep too!

Katie said...

what a wonderful post to read, ms. a! oh my gosh, if i could i'd wrap up the biggest, hugest hugs and send them to air mail. will you settle for hugs via e-mail? will continue to keep you in my thoughts and heart.

Gigi said...

Oh sweetie! I am so glad to hear of his continual improvement!

I think of you all every day.

xo

Furry Bottoms said...

Michael is amazing, amazing, amazing!!

SweetMarie said...

So glad he's home!!!! This is fabulous news!!! Wonderful photos!
hugs!

Lynn said...

our bodies are such a mystery, FANTASTIC changes, and sleeping in his own bed again super. :-) :-) :-)

Saraheinä said...

I'm so glad to see he's home and feeling better! Happy birthday to Michael, he's the same age as my younger brother.

Hartwood Roses said...

This news has absolutely made my week! The road for Michael, and for the rest of you, is still a long one, but this cannot be taken as anything but great progress. The power of the body to heal is a miraculous thing. Thank you, THANK YOU for letting us know.

Chatty Crone said...

Oh my gosh I would call that a miracle - he came home with no heart pump! Now to get his blood clotting and blood work going - the body is a miracle too isn't it??? I pray for his health and his birthday. Happy Birthday Micheal. sandie

Chatty Crone said...

Oh my gosh I would call that a miracle - he came home with no heart pump! Now to get his blood clotting and blood work going - the body is a miracle too isn't it??? I pray for his health and his birthday. Happy Birthday Micheal. sandie

George said...

Thanks for sharing this wonderful news. Michael's story shows that God works in ways that doctors can't always explain. We'll keep all of you in our prayers, and I hope Michael has a very happy birthday.

Sally said...

HOME!!!!!

I'm so happy to hear this; may the good Lord continue in His power as I'm assured He has certainly had a hand in Michael's journey.

Happy Birthday, Michael; may it be a blessed day for all of you.

xoxo

Vicky said...

I was holding my breath all the way through reading this! Its so overwhelming and baffling sometimes the interplay of so many things that lead to such inconclusive results. So tricky!! And that just makes it all that much harder to navigate as a patient. So glad he advocated for himself and got what he needed!! HOME and REST!! Happy Birthday Mike!!

Vicki Lane said...

Such wonderful news! All best wishes to Michael!

Ami said...

FANTASTIC!!! SO glad to read good news! Sending more good wishes to all of you, it's a lot for the family to go through, too.

Kathleen's Blog said...

So happy to get this good news. I was checking your blog every day for new updates, and I'm so relieved to hear the latest.

Take good care and tell Michael he is awesome!!!!!

Linda said...

Wow! Happy birthday to Michael and may he continue to get strong. Bless you all!

ancient one said...

Good News for Michael... Happy Birthday (a couple of days early).. I'm so happy for you!

troutbirder said...

Good news at last. Hope it continues....

Liz @ A Nut in a Nutshell said...

Whew, this is such a blessing to read. It's so hard to see him taking steps back all the time and this definitely sounds good. I'm positively thrilled for him that he's back home!

Help! Mama Remote... said...

Awesome!!!!! He looks happy to be home.

Madge Bloom said...

Wow, what a miracle!

~mel said...

wow woW wOW WOW !!!!!!

Barbara said...

I am so, so, so happy to hear this. Continuing to keep Michael and all of you in my prayers. Happy birthday, Michael!!

Ashley King said...

I am so glad I logged in to read this! I haven't been on in far too long and am so sad to hear about the obstacles you all have endured, but am so happy to hear of the improvements! Sending all my love to you all!!!! I will look for the updates, but praying for continued improvement! Xoxo

Nancy @ A Rural Journal said...

Just shows to go ya -- those doctors don't know everything!

So very happy to see Michael inside your home again. Hugs. xo

Deborah said...

Oh oh oh! I'm so happy for you! I'm so happy for your son!

That last photo says it all.

I am so glad!

Lynn Proctor said...

wow--what a world wind you all have been going through! so happy michael has returned home---happy birthday <3

Mom of the Perpetually Grounded said...

Miracles, Miracles Hon! YAY!
And a Very Special Happy Birthday: )

20 North Ora said...

Miracles do happen! So glad he is home and doing well. Happy belated birthday to him!

Judy

Betty Manousos said...

aw, what great news! i'm so to hear that michael is home!!
yeah, miracles do happen.


big hugs!

CiCi said...

This is like hearing about a miracle. He looks so good at home. I know his spirits are soaring, as are yours. This is great news. And you all will be truly celebrating Michael's birthday!

Pat Tillett said...

It seems like I'm always the last one to the party! I'm happy to read that he is OUT of that place. Hope all is well...