Skip to main content

Medical Drama

Ashley contitnues to bleed, source is still unknown. This bleeding issue has been off and on for almost a year now. She had labs drawn on Monday and her platelet count continues to drop. Her other blood counts are also off. We are hoping that once we find the source of the bleeding her counts will start to stablize.

We are leaving for Shands Hospital bright and early tomorrow morning to see Dr. A. He wants us to bring a fresh stool sample with us. (Let's hope I don't get pulled over by a cop. Can you imagine trying to explain what you have in a sealed container.) Collecting the stool sample should be interesting. If there is old blood her stool, Ashley could possibly be scheduled for both an upper and lower GI scope plus a colonscopy as early as next week.

The good news is that Ashley's liver appears to be holding its own. Liver enzymes are stable and the liver appears to be getting rid of bile as it should. Hopefully, we can keep her liver happy for a very long time. Statistically, however, a happy liver may not be possible. But we will just take one day at a time and not worry about those silly statistics.

Comments

Popular posts from this blog

Living through Dance

In just about six weeks Ashley will dance, not just any dance; she will be competing in a big regional dance competition by dancing her very first solo.  It's completely amazing, seeing Ashley dance, watching her live through dance.  When Ashley was born almost 11 1/2 years ago, I never ever thought, we never thought Ashley would live to dance much else do her first solo.  I can't believe I am crying as I type this.  I didn't think I would get emotional.  It's just amazing!  When I put her in dance at age 3, I did it because I knew I needed to stop sheltering her.  She needed to be around other children.  She needed to feel normal despite what is trying to zap the life out of her; despite her disease.  Honestly I never thought Ashley would be a good dancer or even a great dancer, I just knew dancing was safe; it was the one activity the doctors felt didn't put Ashley's life at risk.  Little did I know how much dancing did and still d...

ALF vs COTA - Loosing Sleep

What would keep a person up past 3:30 am? Decisions... As most of you know we have been using ALF (American Liver Foundation) for Ashley's Liver Transplant Fund. However, in the past year, we have found that ALF is not offering us what we need among a few other reasons which I will not blog about. When we opened Ashley's account with ALF we did so quickly after the death of my dad during Christmas 2006 and New Year 2007, we did not have time to research the best fundraising organizations. There are so many organizations out there from ALF , COTA , NTAF . But because of my dad's untimely death and because his dying wish was that friends, family, etc. donate to Ashley to help defray our medical costs, the first organization that came to mind was the American Liver Foundation. After all, Ashley does have a liver disease. Now, both my husband and I are wondering if we should have used COTA. We have also thought and inquired about opening up a local trust fund for Ashley. Howeve...

Answers lead to more Questions

In great Ashley fashion, she did very well with her trip to the hospital and recovered well from the procedure. Right now, Ashley is off with her Grammie getting spoiled by shopping. With no one in the house but me and the pets, I am off to my own devices which usually means I have to much time to think, to research, to worry, to vent, to hope and to pray. Today Ashley had a broncioscope to find out why she has been coughing for six months. After getting up at 4:30 am and at the hospital at 6 am, the scope began at approximately 7:30 am. The procedure itself took less than 30 minutes. The outcome of the procedure left me with more questions than answers. We do know why Ashley is coughing, Ashley has a vocal cord dysfunction, enlarged adnenoids and tonsils. Finding out why Ashley is coughing is good news, however, we also learned that Ashley may have other issues involving her lungs. There was 60mL of fluid in her lungs. Some samples of her lungs were sent for a cell count, bacterial cu...