Surgery Update!

Well, things went better than expected. I did better than expected. I have been a nervous wreck all week long. I was crying all morning, but when I got here, I felt amazingly calm. I know that we have been in a lot of thoughts and prayers lately. So thankyou to many prayers from around the world. I couldn't have gotten through this without a higher power.

She went in about three and did amazingly well considering she couldn't eat since midnight the night before. We sat there for an hour before our first update. (Last time during surgery, her heart gave out during the anesthesia and the surgeon came in a half hour after she left, never a good sign.) So us and our parents and Marie, said nothing for an hour, just staring at the doors where they come out of the operating room. They came and gave the first update and she did well this time. They continued to give us updates every hour till she was done.

In all, she did great. Her heart was strong enough to stay off the heart and lung machine. She came out intubated and highly sedated. She has a chest tube and her fluid is high right now, but hopefully they can get that stabilized. They have her on morphine but every time she starts to wake up a little, she is extremely uncomfortable. They hope to extubate by morning if her stats stay up through the night.

I feel so greatfull to everyone for helping us get through this. Now we just have to get her heart function to get better. If it doesn't, they have briefly suggested that she may be a candidate for a transplant down the road.

Surgery Tomorrow!

Ok, big breath, we are here! Today is Sunday and Ellie will be in surgery tomorrow! I am starting to feel very uneasy. However, I feel better about it, this time around. We are not in an emergency situation and I feel that they are better prepared for our Ellie, who likes you to expect the unexpected.

Since we just started this blog, I will give you a brief story of how we got here and then I will go back and give details of our journey. Ellie was diagnosed at three months with a neuroblastoma or tumor in her neck. At five and a half months and numerous trips to the doctors, she was diagnosed with congestive heart failure. She was born with a coarchtation of the aorta which caused her heart to be severly enlarged. Her left ventricle touches her ribs. They tried to repair it the next day and her heart gave out so they aborted the surgery and did a heart catheterization and a balloon stint and that worked for the time being. This gave her a chance to get stronger and healthier. Her liver has decreased in size and everything else seems to be pretty healthy. So this time, I feel like she is ready, but as a parent, couldn't be more scared. We are incredibly greatful for those around us who have picked us up and our carrying us through this trying time. We know that our savior is there also and are leaning heavily on him. We will keep you posted in the days to come.

Going Home!!!!

After two and a half weeks, they felt like Ellie was strong enough to go home. She was so excited and thanks to numerous people who helped in the recovery we were on our way. (To Bountiful, not to St. George because they wanted to monitor her close by.)

After her first heart surgery

This picture is a little hard to look at but this is after a successfull surgery to balloon her heart. She was heavily sedated and restrained with baby handcuffs. It was so pathetic!

This is Ellie at two and a half months. This is Horner's Syndrome, which is a pinch on the sympathetic nerve. They did an MRI and found the neuroblastoma in her neck at the base of her skull. Since then her eye is getting better and the tumor is shrinking.

Nothing can prepare you for "C"

So, we know that it is the Horner's syndrome. And there are a myriad of causes, including a neuroblastoma. That being the worst. So Dr. Richen's orders a scan done in St. George. When we got the results, we were excited, because they said that nothing was found. Dr. Richen's was excited also but wanted to confirm that it indeed was a Horner's Syndrome. So we took our scans on a C.D. and off we went to the Moran Eye Center to see Dr. Katz, a neuro opthamologist. This was a few weeks later, but we were feeling good about everything because they ruled out the tumor. They performed a procedure called a cocaine test. They put eye drops of pure cocaine in your eye to find out if it was a true Horner's Syndrome. The test confirmed that and all the doctors were intrigued because it is so rare and to see it in someone so young. They wanted to look at our scan that we brought with us. Next thing we knew, they were taking it over to Primary Children's to have the neurologist look at it. When the doctor called us back into his office, his demeanor changed. He says, " We have found a tumor at the base of the skull in her neck." My stomach hit the floor. If you have ever gone through this, you know what this feels like. It's indescribable. I put it like this, "now I get it, this is what it feels like to have your child diagnosed with a devastating illness." Nate and I and Nate's mom were speechless. We were here to find what else it could be. That was supposedly already ruled out. I thought this must be a mistake. That first night I cried all night. You think doom and gloom when you get a diagnosis like that. That next day, I woke up and decided that we were going to fight this head on and not be so negative.

Horner's Syndrome...

Ellie was moving right along with everything as far as growth and development. But one night as I laid in bed with her on my chest, I felt that something was not right. A few days later, I noticed that as the day went on, her eyelid began to droop. By the end of the day, her eye completely covered her right pupil. When Nate came home, he noticed that her pupil was totally smaller than the other. We rushed her to the doc and he thought that her pupil drooped because of a benign cause and that her pupil was probably off and we didn't notice it until the eyelid dropped. I was back two days later because I was not happy with the "nothing is wrong" approach. They said, if we felt better, we could go see an eye doc. When Nate called the doc on the phone, she new what it was just from the description we gave her over the phone. We went in to see her and she gave us the diagnosis of a Horners' Syndrome. The two things combined, drooping eye and different dilation, mean that something is pinching the sympathetic nerve. This began our journey in the health care system.