Some Good Days Some Bad

So as our next Cardiology appointment approaches for Maccoy(Oct.22) I find myself starting to fall apart.. I start researching and reading and crying and asking why.. I think all of this is a normal thing considering what lies ahead for our little guy and our family. I read and read and read. Some things I read 10 times over and over trying to find more information,but it really all says the same stuff. Then I start to second guess everything, myself mainly (did i understand them right? is this what they meant when they told us this?) come on nurse brain where are you ? I start replaying that horrible day July 5th in my head and then my stomach gets upset. Then I perk back up because I don't have time for a pity party I have 7 kids and a husband that need me to be me! So I move forward to fill my mind with all the information necessary to keep Maccoy healthy to do what is Right for him. What does sitting on the couch crying holding your sweet baby get you? What does beating yourself up for being responsible for his defect get you? Feeling sorry for him/yourself gets you nothing. But reading and researching and filling my head with knowledge gets me to the place I need to be, so that is what I will do! I have been blessed recently to have found some other families going through the same thing we are and that has been a huge help. To see their stories and see their little ones doing so well after their repairs! I have Faith that everything will be fine for my sweet baby!! So I will continue to research and read and cry because that is how I deal with this HUGE issue we are facing! Everyday the surgery gets closer and closer and everyday I get more and more scared. And I think that is normal too? I am thankful that his O2 Sats are still really good, his color is good, we have not had any TET spells, and he is gaining weight really well! I hope that when they do the Echo on the 22nd they tell us all is stable and we can be put off the surgery for at least another 3 months hopefully longer! We will start getting his RSV shots in November and I hope and pray that these keep him safe from RSV which could be really hard on him. He will receive an injection every 28 to 30 days from Nov. to April the peak season for RSV. They are VERY expensive like $1500 each so insurance won't cover them for Cayne. You have to be high risk which Cayne isn't. I am going to leave you with a "bleep" from a site I came across today during all my reading! It puts the 4 Key Factors of Tetralogy of Fallot into easy to understand terms. I liked it very much!

Tetralogy of Fallot Fact Sheet

What is tetralogy of Fallot?

Tetralogy of Fallot (fuh-LOE) is a combination of four different birth defects in the heart.

A healthy heart is a strong, muscular pump that pushes blood through the circulatory system to carry oxygen and nutrients to the body. The heart has four chambers -- two on the right and two on the lef. Blood is pumped through these chambers and regulated by valves that open and close like tiny doors, so that blood can move in only one direction.

After its trip through the body to deliver oxygen, blood is a blue color because it’s no longer oxygen-rich. The blue blood returns to the heart through the right chambers and is pumped through the pulmonary artery into the lungs. In the lungs, it picks up more oxygen and becomes bright red. It then goes back through the pulmonary vein to the left chambers and is pumped through the aorta and out into the body again.

If your child has tetralogy of Fallot, it means the following defects are present:

1.)	Ventricular septal defect (VSD): This is a hole in the wall between the heart’s right and left ventricles (pumping chambers).
2.)	Overriding aorta: This means the aorta is located above the ventricular septal defect, to the right of where it should normally be.
3.)	Pulmonary valve stenosis: This is a narrow place in the pulmonary valve (between the right ventricle and pulmonary artery) that forces the heart to pump harder to push blood through it.
4.)	Right ventricular hypertrophy: Because the heart must work so hard to pump blood through the narrowed pulmonary valve, the muscle wall of the right ventricle may become enlarged and weakened.

Together, these four defects reduce blood flow to the lungs and allow oxygen-poor (blue) blood to be pumped out to the whole body. As a result, the body does not have enough oxygen to meet its needs, and breathing becomes difficult.

We Will Get Through this!! He will be okay! I know it! God wouldn't have given me this beautiful sweet baby if he wasn't going to be okay!! I pray this everyday!! I love you soooooo much Maccoy! Your going to be fine!! It will be hard but you are my fighter and Daddy and I will be right here with you fighting for you!! Together we will get through this! Stronger than ever before!