Tuesday May 7th
At this point Destiny is doing much better and was able to eat some REAL food today and keep it down.
Her weight is at 10.1 kilos and her temp remains low and no sign of fever.
We were granted a wish today from "Make a Wish Foundation".
Destiny will receive at her party on Friday May 10th a new laptop computer with a DVD drive to watch her movies.
Today weight is 9.9 kilos.
Friday May 10th
Destiny was granted her wish and was presented with a laptop computer. The Make a Wish Foundation also brought her several movies and a Blue's Clue's cake. We will have photo's up soon.
KTUU came and interviewed us for The Childrens Miracle Network. It should be aired June 1st between 6pm and 11pm and June 2nd between 8am and 2pm during their telethon. Today weight is 10.5 kilos.
Sunday May 12th
Destiny has been running a temperature for the last two days and her weight is at 11.1 kilos. She has also been breathing heavy. She was given a blood transfusion today to build her blood up. Destiny herself is in very good spirits and full of herself.
Todays weight is 11.2 kilos.
Tuesday May 14th
Destiny had an excellent day! She sat up and sang to all her favorite songs while watching her movies. She also ate much better today. Her weight has remained at 11.2 kilos for the last two days. Some of her meds were changed again, hopefully that is why she felt so much better today. We also hooked up a video cam to her new laptop and she "cheeses" it up for us. We will let you know when we are set up for you to see her!
Todays weight is 11.2 kilos.
Thursday May 16th
Destiny's Mommy flies to California to meet with the doctors at Stanford tomorrow. Auntie Cindy waits with Destiny, bags packed to be flown to California if needed. Today's weight is 11.0 kilos.
Friday May 17th
Doctors at Stanford say they need Destiny to undergo more blood work before they will give us the ok on a transplantation. Destiny has had difficulty keeping any food down. Todays weight is 11.0 kilos.
Sunday May 19th
Destiny had a very restless night and woke up crying in her sleep and itiching. Todays weight is 10.7 kilos.
Tuesday May 21st
Destiny has been running a fever and they are going to run blood work to see if she has an infection. They have started her on more antibotics. Todays weight is 10.9 kilos.
Wednesday May 22nd
Destiny did have an infection but seems to be responding well to the antiotics. Todays weight is 11.0 kilos.
Thursday May 23rd
We received unexpected news from Stanford. They receieved the results from the additional blood work they had requested. Destiny's PRA (panel reactive antibody) is high, 88%. That means that if she had a transplant at this time, her body would reject the new heart. The good news is there is a drug Intravenous Immunoglobulin (IVIg)which is a product pooled from the plasma of thousands of healthy donors. IVIg is composed of immunoglobulins or antibodies, isolated from the pooled plasma. This drug will lower her PRA and when the level is low enough they will give us the go ahead for the transplantaion. She will get this treatment once a month and then she will have her blood tested after two weeks until the treatment is successful. Todays weight is 11.0 kilos.
Friday May 24th
Destiny has begun her treatment and is doing very well. She was very happy and energetic today. She was busy playing peekaboo under her blankets after "hollering" hello to anyone she saw pass by in the hall. Todays weight is 11.1 kilos.
Tuesday May 28th
Destiny is scheduled today at 12:30pm for surgery to have a new central line placed. It is called a Hickman double lumen subclavian central venous catheter. This can be used for long term- but we will always be watching for infection. Destiny was a trooper they came to get her at 12:15 and she waved bye-bye to mom and was ready to go. She took her monkey, duck and favorite blessing blanket with her to surgery. By 1:45pm Destiny was back in her room for recovery awake and talking to everyone. The doctor had an xray taken to check placement of the tube before giving the thumbs up and everything is a go. She finally took a nap around 5pm. Todays weight is 11.2 kilos.
Wednesday May 29th
Destiny was taken on a ride by LifeGuard Alaska to go refuel over at ERA. We had to wait for LifeGuard
to come back to the hospital with another patient. I recommend a scenic tour of the city anytime your not being medevac- talk about incredible. The doctor gave orders to have the femoral artery central line taken out today and in a couple of days to let Destiny up and walk around. She has been in bed since 5/5/02 only to fool us all that she would not moving. She brings her toes to her face and does everything possible without getting out of bed. She loves to wave bye with her toes. Todays weight is 11.4 kilos.
Destiny's Daily Journal
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