Driveline Infection...

Getting a driveline infection is a huge concern for an LVAD patient....it is something you do not want to get.  I have been so careful with Todd's daily dressing changes and became concerned when I saw this little crusty build up around the site.  It wasn't inflamed, smelly, hot and there was no drainage...all things they tell you to look for, but it still didn't look quite right. Our VAD coordinators always said to let them know right away if we had any questions so we took a picture and sent it right away...almost immediately we got a response from Kevin saying it looked good and it was all part of the healing process and NOT to pick at it, make sure we rinsed it well and keep doing what we are doing.  Whew...we were relieved, we definitely did not want to go down that road.  The amazing thing is that our VAD coordinators and Doctors are so awesome at the University of Michigan, they take the time to get right back with you and actually care about their patients...we have been so pleased to be involved with this hospital that we cannot say enough great things about them!!!!  Please don't hesitate to call your coordinators if you think that there is a problem, they are there to help you!!! 

DONATE LIFE!!!!!

We made it into our local newspaper this week.  I was hoping the reporter would mention Donate Life, since he didn't, I will here!  This is the link to our story...

http://www.tctimes.com/news/fenton-man-dies-twice-recovers/article_962c83b4-38ad-11e1-b013-0019bb2963f4.html

Currently more than 110,000 men, women and children are awaiting organ transplants to save their lives. Thousands more are in need of tissue and cornea transplants to restore their mobility and sight. Register to be an organ, eye and tissue donor today and provide hope to those who wait.

Learn the Facts

Despite continuing efforts at public education, misconceptions and inaccuracies about donation persist. Learn these facts to help you better understand organ, eye and tissue donation:

Fact: Anyone can be a potential donor regardless of age, race, or medical history.
Fact: All major religions in the United States support organ, eye and tissue donation and see it as the final act of love and generosity toward others.
Fact: If you are sick or injured and admitted to the hospital, the number one priority is to save your life. Organ, eye and tissue donation can only be considered after you are deceased.
Fact: When you are on the waiting list for an organ, what really counts is the severity of your illness, time spent waiting, blood type, and other important medical information, not your financial status or celebrity status.
Fact: An open casket funeral is possible for organ, eye and tissue donors. Through the entire donation process the body is treated with care, respect and dignity.
Fact: There is no cost to the donor or their family for organ or tissue donation.

Have you registered yet?  It's super easy to do...
http://donatelife.net/register-now/

 


 

HAPPY NEW YEAR!!!

WELCOME 2012!  I am looking forward to a New Year!  We had a busy 2011 with lots of changes to go along with it! 
My Mom started her battle with colon cancer and her trips to the chemo clinic were an eye opener for me.  If you ever even think you are having a bad day you will quickly change your mind when you go up and sit in the clinic for 5 or 6 hours and see what others are struggling with on a daily basis. My Mom...she is fighting this with humor and dignity.

We added another member to our family in February when our daughter Ali was married to Brandon!!  Happy times!!

We had a great summer with our 35th class reunion taking up a large part of our time planning and getting re-acquainted with old friends.  Todd was in a kayak race, in which he proudly took 3rd place, something that he had been wanting to try for a long time...Way to go Todd!! 

I am beginning to think this is staring to sound like one of those Christmas letters and I don't like those so I will get to the point!!  I am looking forward to Todd's health continuing to improve and hopefully getting a new heart,  We are also expecting a new Grand daughter from our daughter, Ali, in May and are thrilled to welcome a new baby into the the family. Our son, David, is changing jobs and wish him continued success in his career. Our son, Zachary, is opening a new barbershop and feel he will be successful in his endeavor. I wish my Mom peace and comfort, her goal is to see Ali's new baby and Todd get his new heart, I hope that comes true for her.  As for me, I am hoping to continue to adjust to the changes in our life and stay strong for our family, to be a better wife, caregiver, Mother and Grandmother.  Good things to come in 2012!!!

A routine.....seriously?????

"Efficiency is intelligent laziness".....my Mom!  I'm not sure if the quote actually originated from my Mother, but it is one she said often enough to us.  I am finding that to be true now, more than ever! Since Todd has been home from the hospital I have been struggling to find a routine that works best for us.  I mean, really, I never had to figure out when to squeeze a dressing change or log numbers from a Heartmate display module in my day, pre LVAD!! I find that if I don't stay on top of things or let them slack, then it all piles up at the end of the day or we are rushing around and the day is chaotic. I like things to run smoothly , hence, my ever tweaking routine!!!  Luckily, I am an early bird...I love to get up and have my quiet time with a cup of coffee before I get my day going.  Today that happens to be at the kitchen table where I can look out and enjoy the neighbor's Christmas lights!!  I get my shower and dressed before I wake Todd up at 7:30....I tried to be nice and let him sleep in longer but that just throws the day off , along with all his medications....that is where the tweaking comes in!!  We are part of a program called VAD Watch, It is a pilot program through U M to monitor his vital signs and device parameters through a website on a 24/7 basis.  We do it right at home and all the results are sent right to our VAD coordinators and to a registered nurse who calls us periodically to check on Todd and basically gives him support, answers questions, ect...That means, right when Todd wakes up he has to get his weight, BP, temp, all the numbers from his Heartmate display, and now his INR (his machine just came) and input the data  into a little monitor that goes directly to this program.  If we don't get it in by a certain time, they will call and check on us.  We have been trying to figure out when a good time to change his dressing would be...we tried first thing in the morning, but it seemed we had so many other things going that we moved it to night time, well, that was OK, but sometimes I would be pretty tired so we changed again to right after dinner and that is working out best right now, it only takes a few minutes but if we get it done then we have the rest of the evening to relax. Something usually comes along to throw things off but I TRY not to be too rigid about it!

I am thrilled that we don't have any appointments for another month , other than right here in town for PT ! Now I am off to get my day going!!
NOTE****  Morning did not run smoothly as planned...Todd got up at 6am...what the heck??  He never stays up at that time, he was just excited to use his new INR monitor....my quiet kitchen table time turned into loud hunting show background noise....my quick retreat into the other room was interrupted by a 6:45 AM phone call, who calls someone before 7 am....????  Oh well, I will try again tomorrow!!! Now I am REALLY off to start my day!!!

HOME SWEET HOME!!! :)

So glad to be home after another doctor visit down in Ann Arbor this morning.  Todd had an appointment with his Physical Rehabilitation doctor.  It wasn't at the hospital where all of our other visits have been , which also happens to be the ONLY place I know how to get to in Ann Arbor, so I was a wreck!!  The problem is is that I hate to drive more than anything!!  Todd has always driven everywhere, I am a horrible, nervous driver and am terrible at directions too!!  To top things off it was foggy this morning and pouring down rain on our way home, but we made it!!!  I don't know why I can't just be one of those relaxed drivers and enjoy it, but I'm not, maybe by the time we are through with all of these appointments I will be!! The one thing I am very thankful for is that it is only about a 40 minute drive, which I used to think was a long drive, now that I am hearing that people drive hours to get to their appointments I have no right to complain!!

I got home and made myself a nice, hot cup of coffee and Todd is napping. We are taking dinner out to my Mom, who is battling cancer.  She is 84 years old and she is a TROOPER...it is getting to the point where we have to help her out a little more and maybe even getting to the time where we have to have someone come in to help us out, but for now my sisters and I are taking turns and trying to come up with the best solution for her.

Our daughter, Ali, me and my Mom....see...doesn't she look great!!! Looking forward to making her dinner tonight and HAPPY that we don't have another appointment for about a month!!!

PHENOMENAL!!! I'll agree with that!!!

Today was our first trip back to UM to see the cardiologist...we both really like her alot.  I am happy to say that she thought Todd was doing "phenomenal"!!!  Everything looked real good.  They were all about his tactical shirt that he uses to hold his batteries!!  A lady in the waiting room had also came up to him wanting to know about it for her husband.

The doctor said in March they will start doing all the testing to get the ball rolling so he can be on the transplant list by May, can't wait for that!

The guy from the home monitoring program met us up there to give us our INR home machine and showed us how to use it...no more going to the lab...seems easy enough to use too!!

Link to tactical holster shirt!!!  http://www.511tactical.com/All-Products/Shirts/Undergear-Shirts/Holster-Shirt.html

The dreaded INR...