Tuesday, February 10, 2009

check out...

The video I posted on ELijah's carepage. I have tried to post it here, but it won't post.

IT IS INCREDIBLE, but SOOOO worth watching. I am pleading with you all to go check it out. Help fight a very large fight.

You can visit his carepage by clicking on this link:

www.carepages.com/carepages/EliPalmer

Sunday, February 8, 2009

Update and Happy CHD Awareness week

We are all beginning to feel better. Things are almost back to normal. I still have a pretty sore throat/cough. Elijah still has quite the cough but is just getting 2 treatments a day and back to eating and tearing up the place! Travis is now just on his asthma maintenece meds with a little cough still. Hannah is fine she barely even got a cold. She seldom gets sick. Jason is doing okay...still a cough, but better. I can TOTALLY understand now why Elijah quit eating/drinking and got so dehydrated. My throat hurt so bad that I couldn't eat much. Everytime I swallowed it just felt like it was ripping. It was awful! I am so thankful for the prayers.


Today is the first day of National Congenital Heart Defect Awareness week. Before our "journey" with Elijah began we had no idea what a CHD was. We had never heard of it before. The majority of our family had never heard of it, nor our friends. We are so blessed by God to have been chosen to be the parents of a CHD baby. Elijah (born with Hypoplastic Left Heart Syndrome or HLHS) is amazing. Any way, below is a little "education" for everyone. I hope you all will take just a few minutes and read through the information below and maybe pass the info on to help raise awareness and maybe it will help raise funds for research to help kids like my little boy.

Some websites you can visit are:
www.heartsofhopemi.org
www.jackofheartsfoundation.com
www.savinglittlehearts.com
www.med.umich.edu/mott/chc/patient_con_hyp.html
www.carepages.com (Elijahs page name is EliPalmer)
www.caringbridge.org

Here are some interesting/eye-opening facts:

Statistics from the March of Dimes

1. Congenital heart defects are the #1 birth defect in the US as well as the world and are the leading cause of infant death in the United States.
2. In the United States, over 35,000 babies a year (1 in 125) are born with a congenital heart defect.
3. Defects may be so slight that the baby appears healthy for many years
4. Defects may be so severe that they are in immediate danger. (HLHS is one of the most severe and occurs in 4 out of 10,000 births.)

Statistics from The Children’s Heart Foundationhttp://www.childrensheartfoundation.org

1. More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.
2. 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.
3. In the US, 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 5 times greater than funding for congenital heart defects.
4. In the last decade, death rates for congenital heart defects have declined by almost 30% due to advances made through research.

According to http://tchin.org/aware/facts.htm:

* Sometimes during early pregnancy, a baby's heart fails to form properly, resulting in structural abnormalities known as Congenital Heart Defects. Although some defects are genetic, in many cases the cause is unknown.
* It is estimated that 40,000 babies with Congenital Heart Defects (CHD) are born in the United States each year. More than 1 million American children and adults with Congenital Heart Defects and Childhood Onset Heart Disease are alive today.
* CHD is the most frequently occurring birth defect, and is the leading cause of birth-defect related deaths.
* Although some babies will be diagnosed at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHDs are not detected until adolescence or adulthood.
* Some CHDs may not require treatment other than periodic visits to a Pediatric Cardiologist. Others can be treated with medications or repaired with surgery and/or procedures. Complex defects may require several surgeries and are never really "cured".
* Many cases of sudden cardiac death in young athletes are caused by undiagnosed CHDs and Childhood Onset Heart Disease.

Tuesday, February 3, 2009

Update-

So I took the boys in to the doctor yesterday for a recheck and boy am I glad I did. Elijah got really bad Sunday night into Monday. While there he was given 2 breathing treatments, which didn't help him. He quit eating/drinking and became very dehydrated. He was very lathargic and glossy eyed. He was wheezing, and very crackely in his lungs and she said he had "rails" which all of those things are lingo for pnemonia. His O2 sats were pretty low (85ish) so he was immediatly placed on 2 liters of oxygen and he was transported by ambulance to U of M. It was so scary for me once the ambluance pulled in and it sank in how sick he was.
The hardest part though was the fact that Hannah was at school in Highland and I had Travis with me and he COULD NOT go in the ambulance with us. I went in to a panic. I had to VERY QUICKLY find someone to get Hannah off the bus and come and pick Travis up from the kids doctor's office. I called 10 people to try to get someone to come pick him up for me before I finally got my little sister who was at work in Novi to come. She had to cash out and clean up at work and come from Novi to brighton. Jason had to call a lady that works at Brighton Wendy's to come get him until my sister got there. It was so hard for me to put him in a total strangers car, especially with him still so sick and looking at me like "mommy, what is going on?" He was so confused. He looked so scared and I had to fight back tears so I didn't scare him more. I have never felt so torn about what to do in my life. Needless to say...through the panic and feeling of helplessness, Travis did get picked up (with meds, and nebulizer in tow) by my little sister (thanks Kel), and she sped home to get Hannah off the bus. They are safe at home with Daddy (and my Mom when he is working). Travis is getting steroids and treatments and doing okay.
So, we got here and Elijah got an IV, blood drawn, chest xray, nose swab for influenza, and RSV. He was so angry. He is positive for pnemonia, and RSV as of right now. Both are viral so no antibiotics...it must simply (lol) run it's course. He has been on oxygen. He isn't eating/drinking much and when he does he just looses it when he coughs. He is so sensitive and pukes so easy!

That is all I can think of right now. I am too tired to recall anything more. If I think of anything else, I will let you know. I just ask that you please pray for health for the boys. That Elijah will be able to maintain his oxygen sats, and that he can eat and drink and sustain his little body. We really need all of you to intercede for us...PLEASE????