Mommy's angry today!

Someone said this to me yesterday..." I'm so glad that Tucker's out of the woods now."  WHAT!?!  Now if you know me, it took all of the strength that I had to not punch her in the throat.  "Out of the woods?"  Let me tell you lady, you have no idea how hard this has been being thrown into the forrest of CHD's with no flashlight!  Did I say that, no, but did I ever want to.   I just smiled and grinned and actually bit on my tongue in my mouth.  What I wanted to say was this. I wish that there was something just one little thing that would make me feel better about saying the following but here isn't!  CHD children die!  They die all the time.  You can be , so called, out of the woods, and you can have completed all of your palliative step surgeries and then you can get a fever, a stomach bug or an infection and it becomes fatal.  Yes, his heart has been corrected, but it will never be "fixed"!  

Being a heart parent is one of the toughest things in the world, you get looked at like a lunatic for being a "germ a phobe" as one virus could take your child from this earth.  You check everyday and night while your child is sleeping to make sure that they are still breathing.  You scream at insurance companies to get them to pay for medications that are not normally covered because without them your child will be hospitalized.  So when you tell me that our son is out of the woods he most certainly is not!  Tucker will never play contact sports and he will never have a normal heart beat.  The next medical step in this process, should his fontan fail, is a heart transplant.  Those are simply the facts!  I have attached more CHD facts below.  

Incidence, Morbidity & Mortality

• Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
• Congenital heart defects are the #1 cause of birthdefect related deaths.
• Congenital heart defects are the leading cause of all infant deaths in the United States.
• Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.
• Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.

Lifelong Disease

• Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.
• There are an estimated 2,000,000 CHD survivors in the United States.
• For the first time, more than 50% of the CHD survivors are adults.
• 10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood.

Economic Factors

• 91,000 life years are lost each year in this country due to congenital heart defects.
• The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.

General CHD FACTS

• More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
• There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
• In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

Research Allocations & Impact

• Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
• Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
• The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem.

I am glad that I said my peace with that..Now to address Tuckers current state.  

Tucker is currently still on two diuretics and hasn't coughed since we were inpatient at children's.  This morning he woke up and coughed a few times, so his VNA RN Bonnie will be out to see him at 11am.  

Tucker developmentally has taken a huge step backwards.  On March 11th we dropped off a very articulate 2 1/2 year old who was putting together 5 word sentences.  What we now have is a child who has digressed back to two words at a time and many words have been replaced with grunts and high pitched screeches.  We have ramped up his early intervention services in hopes that he will not regress further.  His physical set backs have been the usual, lethargic and the inability to sit himself up from lying down.  That will come in time when his incision heals.  

Tucker was eating beautifully prior to surgery, he was eating meats, veggies and fruits like a champ.  Tucker now wants nothing to do with any protein, meat or eggs are almost completely out of his daily diet.  He snacks quite frequently on Teddy Graham's or crackers.  Since he is also allergic to whey, any dairy is out of the question. He has lost three pounds since surgery and we are struggling to put it back on him.  This will always continue to be a challenge.