Thursday, April 22, 2010

Celebrate Life

Did you know that April is organ donation awareness month?

Every year in April Children's Memorial Hospital hosts a Celebrate life party for all transplant recipients from the hospital. We went this year (I think we've only missed two others in eight years) and we had a great time. It's such a wonderful thing to see, all these children that would not be here if it weren't for organ donation.

This year it was at the Brookfield zoo. They reserved the Private picnic area for our group. What a blast! It's nice to be able to meet other people who have children that have been through similar experience's as your child and it's especially nice for Anna to meet other kids like herself.

Oliver was one of Anna's wish granters. He is always at these party's to perform magic for the kids (spending a little extra time with mine because of his special connection with Anna). As always it is so nice to see Oliver and he has promised Anna that he will come and do magic at her next Birthday party! She was (is) so excited for that.

Secretary of State Jesse White came with his tumblers too. We didn't know but One of Anna's tumbling coaches is part of the team. Anna kept telling me that she saw her coach but I wasn't believing her. When I got a closer look I realized that it definitely was him! After their awesome performance Anna went up to him and he was more surprised to see her than we were to see him. I never had the need to let him know of Anna's condition so when he knew why we were there he was shocked! He was very excited to introduce Anna to Jesse White as one of his students!

Saturday, March 20, 2010

Happy Anniversary Anna!

I can't believe it's been 8 years since Anna transplant. March 6th was Anna's Anniversary and we celebrated another healthy year. It has become tradition to go out to eat at TGI Friday's every year and come home and have caked and presents just like another birthday. The Anniversary is actually really close to Anna's 1/2 Birthday and if you take a close look again at the montage to the right of the screen there are a couple pictures of us celebrating her 6 month birthday in the hospital only 3 days before going home after her transplant.

In honor of Anna's Anniversary I would like to share something that I wrote as a story for a fundraiser for Children's memorial hospital Which took place in late February. She has sure come a long way.

Anna was born on September 14 2001 weighing in at 8 pounds five ounces. She was sent home with a clean bill of health.

About a week after coming home her parents noticed that her skin tone was a little off. At her fist visit to the pediatrician her parents were told that Anna had newborn jaundice and putting her in front of a window in some sunlight should do the trick. When that didn’t work Anna’s parents brought her back the pediatrician and they ran some blood tests. Her bilirubin wasn’t high enough to be at a critical level so they said, once again, to put her in a window and she would be fine.

This went on until Anna was about six weeks old. With each blood test her bilirubin level got higher. At six weeks old Anna’s jaundice could not be classified as being just normal newborn jaundice anymore and Anna’s pediatrician sent her to children’s memorial Hospital the very next day to see a liver specialist.

There they saw the head of Hepatology, Dr Whittington. After going over Anna’s chart he suspected she had a liver disease called Biliary Atresia. Anna was admitted for further testing which included a liver biopsy to confirm Dr Whittington’s suspicion.

Biliary Atresia is a disease which happens when the liver’s bile ducts are blocked and/or there are few present.

Once this diagnoses was confirmed Anna had an operation ,called the Kasai, that would possibly prolong the life of her liver. During this operation they attach the small intestine to the liver to drain the bile and toxins. Anna’s parents were informed that most babies with her disease need a transplant before the age of 2.

Anna did well after her operation and went home just seven days later. Anna went home and enjoyed the holidays with her family. Her color got better and things looked good for a couple months.

In January Anna’s skin started looking yellow again and her parents soon discovered that she had an infection in her liver called cholingitis. This problem occurs in children that have had the Kasai operation and is treatable with antibiotics. Anna was once again admitted to Children’s. She was put on IV antibiotics and a permanent line was placed into her arm so that she didn’t have to stay in the hospital for treatment. Anna’s parents were trained on how to take care of her line and administer her antibiotics through a pump. Children’s also sent out a home health care nurse to check on Anna, change her dressings, and draw labs every other day.

Two days before Anna’s 4 week treatment was scheduled to be done Anna started getting very irritable. Her color was getting bad again and her belly was so large from extra fluid from infection that her belly button started to stick out. She was also having a hard time breathing. Even though the home health care nurse was scheduled to come out the next morning Anna’s parents though it was best to rush her to the emergency department at Children’s to get her checked out.

Anna was admitted once again with recurring cholingitis. Just a couple hours later Anna’s breathing got worse and the doctors decided that Anna needed help breathing. She was then transferred to the Pediatric ICU and put on a breathing machine. It was soon found that Anna’s infection had spread throughout her body. They would have to put her on heavy duty antibiotics . Dr. Alonso, another wonderful liver doctor at Children’s Memorial explained it as, “they have to put out a big fire.”

Anna soon became very swollen and unrecognizable to her family. She laid there under sedation, not able to breath on her own, and so helpless. Anna was put on the inactive list for a liver. Because of her condition Anna would not survive a transplant at her current state so if a liver became available she could would not be offered it. It was at this time that Anna’s mom stepped forward to be a living donor for Anna. Instead of waiting for Anna to fight the infection and then wait to be active on the list Anna would have the perfect liver waiting for her when she was ready.

After days of testing Anna’s mom was found to be a good match for Anna! The only problem was trying to get Anna better from this infection. She had so many lines, so many medication pumps going, they were having a hard time stabilizing her blood pressure, and her heart rate dropped so low at times that the nurses had to call a Code Blue on her. Everyone started to worry that Anna would not make it to have the chance at a life saving transplant, but four weeks after Anna got transfored to the ICU she started doing better and even made it out of the ICU! Transplant was scheduled for the following week.

The same surgeon that did Anna’s first operation performed her transplant. His name is Dr. Superina, or as Anna’s parents like to call him DR SUPERMAN! Anna did so well that just nine days after her transplant she was discharged from the hospital.

Besides a few minor bumps in the road Anna is just as healthy and spunky as her older and younger sisters. Without the Doctors and Staff at children’s memorial hospital Anna would not be here today. There is not a day that goes by that Anna’s family doesn’t think of how far Anna has come and how thankful they are for all This hospital did for her. They are truly miracle workers!

As you can see I have not been able to post often. It's really hard to do with having a full time job and three very active little girls. There is also lots of homework and school stuff, orchestra, softball coming up, gymnastics and so on. There was also Jenny's (my best friend) wedding in which we were all in. I was her maid of honor, Mary a Junior bride's maid, Anna and Alex were both flower girls and Jason was an usher.

As always I have to supply some pictures. I wish I had some from the wedding but they are all copywrited and we all were a little to busy to take them ourselves. All I have are a couple of us while we were getting ready.

Anna got a new leotard for her Anniversary