Monday, February 15, 2010

New Blog Design - Thanks Gisele!

Some of you may have noticed my BEAUTIFUL new blog design!  I wanted to let everyone know that this blog was designed by Gisele Jaquenod of the Gisele Jaquenod and Birdie blog and I won it in a contest on her blog!  I was so excited to see the result.  Gisele had me choose from some figures to include, and I chose the baby in the kitty costume because of Bean's love for our cat, Nosey!  She was FANTASTIC to work with and very, very fast.  If you are looking for blog design, or other types of design, please keep her in mind.  I just clicked over to her blog to find her holding another contest for MOO minicards for your business or just for fun!  I can tell you that she does great work and will definitely give you a product that you'll love!  Check out all her different designs on her website and she even offers a number of FREE blog designs!

Thanks Gisele for making my blog a place I will love to visit!

It Takes A Village

Well, as Oscar Wilde said, "It is always with the best of intentions that the worst work is done."  Or, in my case, no work is done.  Last week was really one that I would prefer to forget in many ways.  It was scheduled to the hilt and I had a lot on my list of things to do and ended up getting few to none of them done.  I didn't post daily as I was hoping to because I ended up with spotty internet at best for most of the week and just too many other things that I could not possibly put off doing.  So, this took a backseat.

I had a panic attack last night realizing that I have not slept well for the past week, have a to-do list the size of a small continent, and not much in the way of energy or time management to get that small continent taken care of.  But, I guess I'll just have to approach it with the "How do you eat an elephant?" bite at a time!

The picture up in the corner is Bean in her car seat at the Berkeley High School Speech and Debate tournament that I worked this weekend.  She is not usually this happy in her car seat, but the photographer caught her in a good mood!  It was a looooooong weekend.  I was at the tournament for between 13-15 hours each day on Saturday and Sunday and I'm still here plugging along today.  For those of you unfamiliar with Speech and Debate tournaments, they are like working a 40 hour work week in three days time - and it can definitely be painful.  Luckily Bean had a good sleeping weekend, with only one 4:30 a.m. wake-up this morning.  But, I'm still relatively exhausted and we have a three and a half hour drive back to Chico today at some point.  Ugh....

But, let me get to the title of today's post.  Although it also takes a village to run a Speech and Debate tournament...and in all honesty, I feel like it will take a village to get my life on schedule, I was referring to an article posted on the Congenital Heart Defect Support email list from the Star Tribune in Minnesota.  The article, A Kid-Sized Niche, is a great example of what can happen when people discover their passion.  I have discussed the "profitability gap" for pediatric medical devices on my previous blog, in "'Profitability Gap' Means Adult Treatment for Children", but I did not see the solution that Bradley Slaker saw in creating DesignWise Medical.  Slaker has created a "nonprofit pediatric medical device company" that collaborates with Universities, retired engineers, law students, and others to create solutions for pediatric medical problems.  The article says that Minnesota offers a unique environment with its identification as a "medical tech hotbed".  But, I think its great that Slaker has found a way to produce these devices without them having to be profitable, offering parents like me some hope for solutions that will work.  I also think its great that students at Universities are being involved in the creation, production and legal work involved in these devices.  Perhaps some of them will be inspired to continue in this area.

I am looking forward to starting a new week that will hopefully be better then last week.  I am not at all looking at an easier week this week, but at least I'm expecting the chaos that is sure to ensue and hoping to be able to deal with it a bit better then last week.

Sunday, February 7, 2010

Congenital Heart Defects Awareness Week Begins - Giving Thanks for those who Give Hope

Today kicks off a national campaign to raise awareness of congenital heart defects!  Bean's problem was Dilated Cardiomyopathy - the cause is idiopathic AKA "we don't have a clue".  Right now, as she is "creeping" across the living room floor towards me (she isn't quite crawling yet...she has a really big head), I think about how lucky we were to have someone as knowledgeable as the doctor who admitted her at Sutter Memorial in Sacramento.  So, my focus this week is going to be on the doctors, nurses, surgeons, specialists, etc. who make survival of these little ones so much more probable than in the past.  Some of them will be ones that Bean worked with directly, others will be those I hear about on the parents' listservs I am active on and still others will be those we would probably never hear about because they are doing research quietly in a lab somewhere.  Hopefully, this will serve as an introduction to some of the people who can help families who feel helpless and give hope to those who feel hopeless.

After spending five days in our local hospital with what we thought was complications caused by RSV, Bean was transferred to Sutter Memorial's PICU because she was going to need to be on a ventilator to help her little lungs clear.  We received a call as we were driving down from the admitting doctor, Daniel Falco.  He told us he was going to have to intubate her (as we had already been told), but wanted to know if anyone had spoken to us about her heart.  No one had.  He told us it was five times its normal size and that Bean was a "sick little girl".  My heart sank.  When we arrived, he had intubated her and wanted to talk.  He took us to a waiting room with bright murals and comfy chairs and there he told us that the intubation was complete but had been "a little harried" with Bean reacting negatively to the Ketamine he used to sedate her and she had almost stopped breathing.  He was very honest and forthcoming and I think both Jason and I felt MORE confident in him because he was honest with us than less confident because something had gone wrong.  He told us about her heart and that he was referring her to a cardiologist on staff who would be by to speak with us and he had ordered an EKG and an echocardiogram.  At the time, I had heard these words, but had no idea what they were and no experience with these types of tests in the past.  Dr. Falco sounded totally competent, he was confident in what he was saying and he had a way of sounding comforting despite the fact that he was telling us things that were totally disconcerting.  He had a plan, he sounded determined and we felt confident that things were going to get done that needed to get done.  This is, I think, a major factor in making the difference between a good doctor and a great doctor - if they can communicate effectively, make you feel totally confident in what they are doing AND get what needs to be done done, then they are great.  If they get what needs to be done done, but makes you feel like you are in the dark or not sure of what or why things are happening then they are good doctors, but not great.

Dr. Falco was Bean's doctor for only a week.  I believe he was a big reason she was transferred to Lucille Packard Children's Hospital so quickly.  He had done both his residency and his fellowship there.  In  addition to his being a doctor at Sutter Memorial, he is also on the board of the Child Abuse Prevention Center.  He has a pediatrics practice in Sacramento in addition to serving in the Critical Care area of the PICU at Sutter Memorial.  He is an excellent doctor and I think was the first step in making Bean a survivor of a CHD.  After writing this blog post, I realize that I want to let Dr. Falco know how I feel, so he will be receiving one of our Valentine's Day cards with Bean's picture on it and a note explaining my gratitude and appreciation.  I only hope/wish that everyone can have a doctor like Dr. Falco if they have to go through discovering a child of theirs has CHD.  Thanks Dr. Falco!

Monday, February 1, 2010

Great Series of Blog Posts for the Month of February

Over at CHD-UK there will be a great series of blog posts celebrating stories of individuals who have experienced congenital heart defects.  The first story is truly inspirational - a man who came back from near-death and heart surgery to complete an Iron Man Triathlon!  Check the story of David Watkins out over at CHD-UK.

And just think - if David Watkins can complete an ironman triathlon, can't you complete 30 minutes of exercise today?  Do it - for your heart!

Happy Heart Month!

Just wanted to take a moment to wish every reader out there happy heart month! I will be dedicating daily posts this month to healthy hearts! Bean had a big, big heart, but it just didn't work right. She was lucky enough to receive the gift of a second heart that does work right! In honor of her donor and the donor's family, we will be sure to take very good care of this heart! At this age, that is pretty easy...but as she grows up, it will get more difficult. Both my hubby and I could do a little work on our own heart health! So, this will be a month of education on how to keep hearts healthy, how to improve the health of hearts that may not be as healthy and finally, how much of a miracle it is to celebrate Bean's first birthday thanks to someone else's generous heart.

My resolution for this month was already to exercise at least once a day, so that fits right into the heart healthy focus for this month! But, I hope to find and offer any readers a lot of valuable information about keeping their heart healthy in the long-term!

So, Happy Heart Month! Take care of yours and be generous in giving love from it!

And, Six Years Later - Marking the Good Times

Hello!  Long time no write on this blog.  I have always included a link to this blog on my email signature to keep people reading Bean...