Monday, February 25, 2013

Two Good Days... Finally

We've had a rough week and Michael has had it even rougher.  After the thumbs up photo from Monday, he lost a little ground and had several things happen during the week.  He began having a very erratic heart rate and they had to shock it back to a decent rhythm.  For several hours after that, we had to keep a close eye (and hand) on him to keep him from pulling out drains and IVs.  Then he began having fluid collect and some clotting issues.  They did a temporary bedside procedure to drain some of it, then took him down to insert another drain tube to drain the fluid around his heart.

He received two units of blood and at some point (it's a blur) he lost the vision in his left eye for a brief period of time, due to a TIA. (mini stroke)  The vision returned and there shouldn't be any lasting damage.

Saturday and Sunday have been pretty darn good.  Thank you, Lord!  He had one of the 5 drains removed, as well as the central line in his neck.  He is looking forward to having more things removed, so he can try to get walking and transfer to the rehab floor.

We start classes on Tuesday, to begin learning how to take care of him and the LVAD, to be able to eventually bring him home.  We're already learning things about his care, from the nurses.  Truthfully, we're learning more than I ever wanted to know, about a whole lot of things, including myself.  I'm stronger than I ever imagined I could be. 

When he gets to the 12th floor, I hope to be able to start getting back to reading about all your lives.  I could sure use a break from mine!


Wednesday, February 20, 2013

Wordless Wednesday - After LVAD

If you are squeamish, stop here!  If not, there's one more below.  (I didn't take this photo, he did, because he couldn't see what's been done to him)


Sunday, February 17, 2013

What Day Is It?

Once again I find myself apologizing for not having time to read, or comment and barely any time to update the current status with my Son.  (His name is Michael and he's 41 years old)

Just prior to doing his liver biopsy on Wednesday, labs showed a potential red flag with the heparin antibody.  He had been scheduled to receive the LVAD on Friday.  Things were moving so fast, he hadn't had time to absorb the gravity of the situation and, while we weren't happy with the new development, giving him a little extra time was a blessing.  His kids were able to get back from out of town and have been having some time to visit, while he is still able to speak to them and explain things.  Until he spoke to them, they had been told very little, other than Daddy was very sick and his heart wasn't working well.  I wish I had recorded his explanation, it was truly wonderful!  He managed to get through it in sane, rational terms they could understand and kept it together, without falling completely apart.  It was very hard on him, the panic and emotion are finally setting in.  He's terrified.

He is tentatively scheduled for the surgery on Monday, pending the outcome of more extensive labs.  If not on Monday, it will be Tuesday.

The entire family would like to thank everyone for their thoughts and prayers.  We really, really appreciate it and hope you will continue.

Thank you from the bottom of my heart!

Here is a picture of him holding the LVAD he will be getting and another one after he got the IABP.  He's even thinner now.  At one point he was almost at 200 pounds, because of fluid.   He's down to about 145 and has had some grooming since this photo.


Friday, February 8, 2013

Life As We Knew It...

...has ceased to exist.  The bombardment of terminology and information is overwhelming, to say the least.  We are hanging in there, sometimes just barely.

The lung biopsy was a combination of good news and bad news.  The mass they examined was infarct, from a blood clot, not cancer.  His kidneys are doing well, his liver is showing improvement, however the heart that was only functioning at 10%, was not showing signs of improvement.  Things took a turn yesterday after they came in to do an echo.  Not long after they did it, they came back and did a second echo and gave us the news that his heart needed assistance.  Medication was added and he was put in line for an LVAD (left ventricular assist device).  Between about 3 and 8pm, the medication had helped, somewhat.  We told him goodbye for the procedure and the next news we received, was that instead of the LVAD, he was showing enough improvement to allow them to do a less invasive IABP (intra aortic balloon pump). 

Confused yet?  Yeah, us too.  Trying to comprehend everything and not allow your emotions to take over, is tremendously hard.  There have been times I thought I would pass out, just from the amount of information being thrown at us.  So far I haven't.  I'm trying to do everything in my power to be strong for my son.  They are currently doing the preliminary testing, etc, to see if he qualifies for a heart transplant, if it comes to that.  We are hoping the IABP will give his heart enough of a boost for it to heal and make that unnecessary.

There have been some humorous moments during this crisis, like when my son said, they give me this luxury suite and a prison toilet. (out in the open)  He never even had the chance to get up and use that prison toilet.  They gave him a very streamlined bedpan and he HATED THAT.  Said they gave him a Toyota Celica and he needed a Ford F150 king cab!  We live for those little things that help ease the tension.

I'm sorry I haven't been able to respond to email and blog comments.  This is the first time I've had a few minutes to try to update a number of people at once.  I even got to use my own toilet, at my own house, instead of the public toilets in the hospital... it's the little things that help get you through!

We really appreciate the thoughts and prayers and hope you will continue.  I really, really miss you all!

Monday, February 4, 2013

Retirement Hasn't Started Well

Please forgive me for not visiting recently, we are in the middle of a family crisis.

My oldest Son has been sick since before Christmas and after several trips to the doctor and numerous prescriptions to treat what they thought was the flu and upper respiratory issues, he still wasn't getting well.  When he began vomiting blood, he was finally convinced he needed to seek emergency care.  At the ER, they found out his heart was enlarged and only pumping at 10%, he has a mass in his abdomen and fluid on his lungs.  He was admitted.  

After receiving a picc line when they were unable draw anymore blood, his leg began to swell to gigantic proportions and his condition worsened and his blood pressure took a nose dive.  He was admitted to ICU.  As more test results came in and words like cancer and heart transplant were being tossed around like hellos, he was transferred downtown to the Cooley Building at St. Luke's.

They are pretty sure a virus has damaged his heart, but they haven't been able to figure out what virus.   A bone marrow biopsy was done on Sunday and I don't know the results yet.  He has a blood clot in his heart and leg.  There is a whole team working to find some answers.

I haven't had time to be on the computer and while I miss you very much, my Son comes first.

I believe in the power of prayer and I'm not ashamed to beg for yours.  Please, please, please pray for my Son and our family.

I hope to have some encouraging news, soon.  So far, there hasn't been much.