Parker's second open heart surgery...

I was not sure exactly what to post here about how I feel about Parker's surgery in two weeks. When I found out a year ago that surgery was an option I was FURIOUS. I was angry at God that he was sick, I was angry at myself because I thought I had done something while I was pregnant to give Parker his heart defect. I have since learned that God didn't give Parker a broken heart and I didn't do anything wrong either - we live in imperfect bodies. All of our bodies have problems - we all get sick. This is no one's fault. It just happened. God is here for us to give us strength and peace when we have run out but He did not DO this to us.

To my own amazement, I am slowly becoming grateful for Parker's surgery. Once again, his life will be saved. If this surgery was not an option, he would be months or years away from heart failure. Once again, science and modern medicine will save his life. Once again these two men Dr Mavroudis and Dr Backer will reach their hands into his chest and repair the damage that has been done and make his heart work better. Once again we have heard "this is fixable".

Do you know what the alternative is? I have met women in the last two years who have heard "there is nothing left to try" or "his body is too weak to try anything else". I have sat in a waiting room preparing to hear those words and then the doctor came in smiling and said "this is fixable". I have tried to capture the way I felt that day - how oddly happy I was to hear that Parker had TGA. Because the alternative was so bad.

I am sad, really sad about what he is about to go through. Sometimes my instinct is just to drive past the hospital next Tuesday so that no one can hurt him. I am sad because I know he is going to be in pain and I know he is going to be scared. I am so anxious about how to comfort him and make sure this as easy as possible for him. When I close my eyes at night the last thing that I see before I fall asleep is his little lips squished together with tape holding the ventilator in place. I am sad about all of these things - but I will take him to the hospital next Tuesday. I will help hold him down while they draw blood. I will tell him that everything will feel better in a few days even though I know he doesn't understand that. I will do all of it because this operation will save his heart again. And even though I am so sad and wish I could change places with him next week - I will always be grateful that this surgery is an option - I will embrace it and we will all be blessed by it.

Another confession...

Tonight I was looking at our TV guide and I saw a movie called Echo

and I thought

why would they make movie about an echo (like echocardiogram)? Is it the story of the first echo? Weird...

Hearts are my life....

Da Dangit...

Confession: Tonight after I put Parker to bed I came out into the living room to pick up. Once I was done I sat down to watch TV and check my email. I realized Noggin was still on and I started to change it when one of my favorite songs came on....so I left it on until the end....tapping my foot and everything....

Even more...I watched the MTV movie awards last night and I did not know ONE song that was performed!!!!

I am pretty sure this wasn't supposed to happen until I was at least twenty seven.

My friend Melissa's girl

I usually don't post about friends from my support group's children, but Melissa has just been so wonderful to me and we have been praying for each others kids for over a year. Melissa's daughter's name is Josie. Josie is 2 and was born with HLHS. She has just sailed through her three open heart surgeries and should be "set" as far as her heart goes for a long time! I found out this evening that she had a stroke while waiting to see a doctor this week. I am not sure what all this means as I have literally just learned about this a few minutes ago. I am going to post Melissa's carepage entry:


Please pray for Josie. Josie had not been feeling well this week so we made a doctor appointment for her Saturday morning. While waiting to go back to the exam room, Josie was sitting in a chair at a table and all of a sudden she slumped out of the chair and we could tell she wasn't right. She was rigid and her right side had gone limp. We yelled for help, went to one hospital wherre they took blood and ran a few tests and then ended up at our hospital, Hope Children's. After a MRI we found out that Josie had a small stroke. There are 2 kinds of strokes that occur - the first involved bleeding on the brain which is more serious - and the second, that not does not involve bleeding and was due to a small clot. Thankfully, Josie's stroke did not involve bleeding, but as of right now she can not walk, talk, or even sit up on her own. She is starting to show more movement on her right side, but she is scared, confused and I just want my baby back. I feel like someone has robbed me of my baby I want her back. I want to wake up from this awful nightmare. Right now the doctors are just monitoring her care - it's amazing that her heart function is doing good, they have no real concerns as of right now. The computers at the hospital just plain suck so I don't know when I will be able to update again. Josie can use all your prayers and positive thoughts right now. Andy and I can too. I am having a real difficult time dealing with this. I have sat through 3 of her open heart surgeries yet the past 24 hours have almost been just as difficult and painful. We will update when we have a chance.

Josie's carepage is JosieBall

I do not know anything about strokes or how serious they are or if it causes permant damage...but I'm sure they are all so scared. Please say some prayers for them tonight.

Update?

Wow - I know it has been a long time since I have last posted! We have had our hands full here! Parker has been sick for almost 3 weeks! He had some weird virus and had a fever for 6 days - then the whole thing has turned into a sinus infection. PLUS the poor guy has four molars coming in and possibly his canine teeth (is that the technical name?). At any rate - I have been sitting around here watching my hair turn grey worrying about this boy! Seriously - 6 grey hairs now....

We are about 12 days away from his next echo and I have to say that our whole future seems to be hanging in the balance of this decision! I am just praying that it is not time for surgery. I do not feel up to it. I don't know how to do it. I don't know how to get in the car and drive him to the hospital and hand him back over. My instinct is to run away with him so that no one can hurt him. I guess Mother's Intuition is flawed after all...I am really praying that whatever the echo shows, the decision to have surgery or postpone it will be very obvious and not something Jon and I have to come home and decide on our own.

On a lighter note, I am loving my job! It is FANTASTIC to be working around so many dramatic people again! I have met some wonderful girls and am just having a blast! I have not enjoyed going to work this much in a LONG time and it is such a blessing! Parker has the hang of it too which makes it even better. He really likes his teachers and I think is nice to the kids.

He is such a handful these days! He has mastered the art of temper tantrums. He collapses to the floor dropping to his knees then fallings the rest of the way down in a "WHY WHY WHY IS THIS HAPPENING?" sort of tormented motion. He flips to his back and kicks his feet turning his body in a circle. God forbid he hit his head on something during this maneuver or the whole thing escalates. It is just hysterical to watch. Well, sometimes it's funny. It is not funny when he does this on the elevator or on an airplane. That is not funny. It is also not funny at 5 in the morning - he has taken to waking up with the sun. I do not have it in me to be understanding or sympathetic to anything that early in the morning. If he wakes up that early expecting Mrs. Cleaver he is SOL! You would think he would just opt to play quietly in his room until 7 but no, he would rather deal with me and I guess that is sweet. He is talking a lot! He is capable of following directions like "give this Dad" or "go find your shoes" but I am learning capable is not always willing and it is the getting him to be willing part that I need to work on. Anyway, we are all doing just fine here! I do love this site and I miss writing - it is a great outlet. I just have not had time for outlets!!! I will do better! Thanks for still checking!

Does this make me look like that rat in Ratatouille?

I think I need some sleep....

Dang

So this evening I was wasting time on facebook, looking up people I work with now. I left a message on my co-teachers facebook bad mouthing one of the kids in our class. Jon said "you better be careful - I hope their parents don't read what you said". I said, way to quickly, "They are parents...what would they be doing on facebook?!" To which Jon replied "You are a parent...and you are on facebook"


riiiiiiight