Monday, June 6, 2011

June 6th Cardiologist appointment.

Today was the day we were dreading. Today was the day we were supposed to set the date of surgery. It's not a specific date yet, but it will be when the surgery team gets together to set the date, then they call us. We requested a Dr. Christian. She is supposed to be an excellent surgeon. About a month ago, I heard of a person whose little boy had the same surgery our Kenzie is supposed to have. He was in the insurance business and I need to know what to do on August 31st when our Cobra Insurance runs out. That's another blog. Anyway, it seemed like a gift from God that I was looking for a person to help me with insurance and someone who had the same surgery as our little girl is going to have. Another weird little note: I didn't know the guys name, I just knew he worked for State Farm and he was in Spring Hill. So I hopped on the Internet and I was prepared to call every insurance agent in Spring Hill to find him. I called the very first one that popped up on Google, and it was him. You make your own judgment here. We set a date to talk about the surgery. We talked about an hour. He told us who their surgeon was (Dr. Christian) and how it all went down. Now during our conversation I found out he was from Martin, TN, where I went to college and played baseball, and he was best friends with an old roomie of mine Paul Slack. So I figured with all the signs pointing to this guy, I want the same surgeon his baby had. I mean, I know that was one successful surgery under her belt.
We had an echocardiogram today. It shows little pictures of the heart and blood flowing through the heart. She was such a trooper. She just laid back and enjoyed the little massage. After the echo we weighed her and they took oxygen levels. She weighs twelve lbs, and her oxygen is 91%. Fabulous. Now we go to talk to Dr. Ammons (her cardiologist). He is a very nice guy who has a great bed side manner. We have a bunch of questions. One I had was, "Could you tell if the valve could be spared in the surgery?" This is big. If the valve is spared and the surgery goes well, it will be a one and done surgery. He is kinda vague, which I figured. If I heard him correctly he said, "On the echo the valve looks small, but by looking at her, she looks pink and her O2 levels being at 91 % isn't really telling the same tale". So he told us that if the valve has to be replaced then there will have to be a second surgery when she get older. This is where my brain gets to thinking, and I get upset. It is hard for me to think of my sweet little 8 year old being scared having to go through another surgery. So this is one thing I want people to ask for in their prayers. I am not sure how some parents do it. In that hospital there are kids that are going through bigger surgeries than we are. Parents going through much harder times than we are. In all that we endured today we have hope that Kenzie will be ok. I mean talking to the doctors, you would think this is like sewing up a finger. I mean they act like this is nothing. And truthfully, that is the way I want them to be. I want a surgeon who has done this a thousand times. I want an anesthesiologist that has been in these surgeries a thousand times with every one of them turning out perfect. At the end of the day my wife and I both are thankful that they have found this problem, have the ability to fix the problem, Kenzie will not remember this surgery, and that we have the means to get the care that baby Kenzie needs. So we ask for you to pray for a complete healing, steady hands and clear heads for the surgeons, for her valve to be spared and no other unforseen complications. Also, some people say they cannot leave comments on here so we are switching, We will continue to blog at www.kenziesbrokenheart.com.

Sunday, May 29, 2011

May 29 Kenzie Elizabeth

Today was a good day. I spent a lot of time with Kenzie. When I hold her I can't help but kiss all over her. She's so stinking cute. Sundays for some reason seem more emotional for me than some of the other days. I guess probably because when you go to church and you listen to sermons about God, Jesus, and Heaven you are comforted knowing that if the worse were to happen she would be in the arms of someone who loves her as much as we do. I am a very selfish person and I want to keep her around for a long time. Don't get me wrong I am almost 100% convinced she will be ok. Did you catch that? I said almost. There is always a little doubt no matter how hard I try to make myself believe she is gonna be ok.
We have some friends who's little girl had open heart surgery and had her aorta replaced. At first it looked good, then she got a bacterial infection, that caused her lung to collapse. She has been having a rough way to go. She has a website. www.shoutoutforscout.com if you want to check it out. I am not sure how her parents are holding up, but somehow they are. I know in a few weeks we are gonna be in the same boat as they are and it makes my stomach turn upside down. There is no way to run from it, or fight it, or hide from it. It's coming and there is nothing I nor my wife can do about it. The only thing we can do is pray and hand it over to God and Jesus. So that is what I am asking for, prayers, prayers, prayers.

Thursday, May 19, 2011

Kenzie Crawford May 19/2011




Kenzie was born with a congenital heart defect called tetralogy of fallot. This is where the heart has a hole between the two ventricles, the pulmonary artery is restricted, the aorta is displaced (not laying exactly right.) This defect has to be corrected by open heart surgery. She is supposed to have this surgery in early July. Right now we are going to the Dr. about every 2 weeks. This is where it is kinda hard. Everytime we go to the doctor they tell us how good she is doing, but in the end we know surgery is waiting. Most of these babies have a hard time gaining weight because they are lazy feeders. The harder she has to work, the harder her heart has to work, which makes her tired. They want her to get to at least 11 lbs, right now she is 10.7, so she is gaining weight.




When we take Kenzie to the doctor, they measure her oxygen levels. When she was born, her oxygen levels were 100%. The next time we went they were 96%. 2 weeks ago they were 90%. There are adults that are walking around whose oxygen levels aren't that good, but the fact is that what is beginning to happen is her little heart can't get the O2 to the tissues the way it is supposed to. The bigger she gets the worse it gets, because when the heart gets bigger the problems get bigger. Also, if her heart beats harder because of the restriction of the pulmonary artery, the right ventricle would get bigger and thicker. Now for biceps that is good, for the heart it is bad. When the heart gets thicker, it begins to lose elasticity and can't beat and eventually gives out, causing heart failure. So our remedy to this situation is to not let her cry. If she cries, her body would need more oxygen which her heart can't give her. If she cries too hard, she could become blue which is termed a "tet spell" . She hasn't had a bad one yet, but we do notice some greyish tint sometimes. We usually hold her all the time. Alicia even lets her sleep on her at night. This is very tiresome, but we know it is temporary. It does make it a little tougher on the old back, but that will pass, too.