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

Friday, December 04, 2009

Still around

Since the last time we updated:

We got a puppy!

Alex likes to believe he's her dog

Gizmo kind of likes him

Did I mention his name is Hester (as in Devin Hester of the Chicago Bears)

We all love him!

And, Halloween came and went.

Mary was Michael Jackson

And just recently Thanksgiving came and went. I hosted this year and cooked the entire dinner on my own! I ended up roasting a Turkey in the oven and Jason deep fried one. Both Turkeys were excellent!

Tuesday, September 01, 2009

Back to school!

Mary started Middle school this year and is loving it! She thinks it's awesome that she gets to travel from class to class, have a locker combination and all of that. She is making tones of friends and can't wait to get check out some of the clubs. Anna is now in 2nd grade and she loves that she can now walk to school (since we moved just down the block from it) and she got one of Mary's old teachers this year. Alexandria started pre-school today. She was so excited and loved every minute of it! She got one of Anna's old preschool teachers who we just adore. She is actually one of our favorite nurses from Children's PICU, mother in law.

Sunday, July 19, 2009

Sorry I haven't updated since that last post when Anna had her biopsy. I know I said I would let you know the results, and I'm sure most of you do anyway, but for those of you who only know of us from this blog I'm sorry I left you hanging. I actually just found of a couple people who read this blog that I didn't know even knew about it. For those of you, sorry. I really didn't think many people looked here. Also I have been working a lot, have been really tired, and we just found out last week that we are moving at the end of this month so I just haven't had the time.

We didn't get the results we wanted to get. Anna is still having mild rejection. It was another shocker that no one expected. Her doctors said the expected to see resalution. Let me tell you, even though we knew that she had rejection in January, it was unexpected that it would still be going on 4 months later, especially with Anna being put back on her meds. The good news is that it still looked better than her last episode (which they said was mild) so this is even more mild. They did not have to put Anna back on steroids, they just put her on a twice a day dose (up from a once a day dose) of her immune suppressant medication. This stinks because it's twice the amount of immune suppressants. A week later they turned up her dose a even little more than that. I just figured out the other day that she has not been on this high of a dose since she first started taking this med when she was 2 (a different immune suppressant was used before that). We once again have to worry about her picking up every little virus floating around. Since then she picked up a strep skin infection, a summer cold, her eczema is back full force, and she seems to have an ear infection now that I'm taking her to the pediatrician tomorow.

Once again, all of her blood work looks perfect! Nobody understands why nothing shows up in her labs and only in her biopsy's. We talked to the doctor and expressed our concerns that this might be something else but she assured us that it was rejection, the biopsy did not show any liver damage, and we'll just continue to monitor. Another biopsy will be repeated in 6 months and labs still every 2 weeks until her medication level stays where they need it to be to control this rejection and to keep an eye on her liver numbers. I feel like we are where we were a year out of her transplant and that is a hard place to be right now.

Tuesday, June 16, 2009

Sitting here at Children's

I'm just sitting here in the surgical observation area, watching Anna and Jason sleep. We woke up at 4:30 this morning so they are pooped. I on the other hand, I guess I'm just used to waking up early. On a normal work day I am already up for for an hour and a half by that time.

Anna went in for her biopsy by eight this morning, done by 8:15am, and it is now 10:00am. She did so well, as usual. I was a little worried because she was a bit nervous this time around. Her nervousness really surprised me because she is usually so nonchalant about this stuff. I guess she is just getting older and more aware of what is happening and why. Before it was all fun stuff because she gets spoiled here.

Dr. Ekong came out after the procedure, said everything went fine, and was on her way to do a biopsy on this tiny little baby that was waiting in the holding area. The mommy handed the baby off with tears in her eyes. Being here brings back memories of Anna when she was that little and how scared we were for her. I wanted to go over to that mom and give her a hug, and tell her it would all be OK. It feels like just yesterday when Jason and I were in those parents' position. I also remember that there is nothing you can say that would comfort those parents. The only thing would be for the doctor to come out and say that it was all a big mistake, your child does not have a liver disease, she is perfectly healthy!

So Anyway, Dr. Ekong let us know that she was not going to put a rush on looking at the biopsy because she doesn't anticipate anything showing up especially with her labs from Sunday looking so good. When she left Jason and I discussed how very silly that sounded to us. Didn't she say that last time? Her labs did look perfect, but there were still signs of rejection in her biopsy. It's not that I want her to put a rush on it because Anna is not showing any symptoms of any sort, it just sounded silly the way she put it. A few days is nothing, and I'll bet everything is fine.

So, here we sit until 2:00 this afternoon, and they had better let us go right away! I'll go nuts just sitting her. I don't know how I did this for weeks at a time.

Saturday, May 16, 2009

Ballet rectial

Alex did so well in her dance recital today! I actually had to get this video from her dress rehearsal from the night before because we weren't allowed to take video at her actual recital. She looked so cute and did very well for her first time!

Alex is the one in the middle with the extremely long hair!

And some more pictures!