Skip to main content

Back to the Medical Grindstone

It's a new year with the same old medical issues. With the new cocktail of medicines that Ashley has been on for the last month, we expected to see some change. However, there really hasn't been any significant change; she isn't worse but she isn't better either. Her cough is still there and she is still coughing just as frequently. While we were in Mobile for Christmas, we were able to watch Ashley more and really see her symptoms. She is coughing at night but it's a different type of cough, mostly she wakes herself up takes a deep breath and goes back to sleep. Sometimes she wakes up and takes a walk; we found her sleeping in various places in my mom's house. Maybe she has sleep apnea, maybe she is sleep walking, maybe it is something else that we will never know about.

Anyway, we talked to Ashley's pulmonologist over the Christmas break. He agreed with us regarding the ENT assessment of Ashley's cough. He agrees that it is not a sinus infection but something more. We are going to get a new ENT and go for a second opinion. The pulmonologist firmly believes that her adenoids and tonsils need to come out, we just need an ENT to agree.

Dr. Livingston, the pulmonologist, and Ashley's GI doc, Dr. Andres, also talked over the Christmas break regarding the latest with Ashley. And they both have agreed to repeat the broncioscope and do an upper and lower Endoscopy. Those procedures will be scheduled soon. The good news is we don't have to go to Shands (Gainesville, Florida) for these procedures; we are going to have them done locally in Orlando. Having the procedures done locally will mean Ashley won't miss much school or miss dance. Having Ashley attend school regularly helps her keep up with her classwork and allows her to maintain her A/B average. Being able to attend dance classes is important because Ashley has her first dance competition in Lakeland, Florida on February 1. School and dance make Ashley feel normal so we try hard to maintain that normalcy.

The only thing I am not sure of is whether or not Ashley will have her tonsils and adenoids removed before both her scopes or after. What I am sure of is that we are officially back to the medical grindstone and medical bills.

Love to all, Laurie

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...