Reflux, a severe case of GERD. Ashley saw her Pulmonologist and he strongly believes she has reflux but he also says she has some other issues yet to be diagnosed. We are putting off the adenoidectomy and tonsilectomy until after the repeat broncioscope and the Endoscope which should be scheduled sometime after January 28. We are meeting with a new local GI doc after January 28, at that appointment we will schedule the two scopes. Once the scope results are in, we will discuss surgery.
Right now, Ashley's liver enzymes are normal but her Total Bili is going up but again still in normal range. Her platelets are at 90,000 (normal is between 155 to 450). Her CO2 level is low but not alarmingly low, her BUN/Creat Ratio is high, her WBC count is low, her HCT low, and Lymphs absolute is low. She also some other values that are abnormal but I have no clue what the values mean. Her C4 Complement is low, her Anton Gap is high. I need to Google those two values to define them. I am sure Ashley's labs will be repeated before the scopes are performed.
Ashley will be having some immunization shots on Thursday. Her liver doc highly recommends Ashley getting all of her shots now rather than later to prepare for transplant. I can't remember what shots she needs but I believe she will be getting the Hep A series, the pneumovax and a couple of others that I can't remember right now.
Here is something that will rip at your heart. Today in the car, on the way home from dance, Ashley told me that she would probably be happier if she died. She said that at least when she is dead, she wouldn't have her disease anymore, she'd be healthy, no more cough, no more needles or doctors, no more food restrictions and she would be able to do things that she couldn't do when she was alive. I hate when she talks like that, I try so hard to change the subject but she wants to talk about it. She has no fear of death at all, as a matter of fact her image of heaven is beautiful. The way she describes her vision of heaven would make a non-believer want to believe.
It's time to change the subject to something more peaceful; more fun! We are in the process of redecorating Ashley's room. Right now, there is new paint on the wall (Granny Smith Apple Green) and her new bed ensemble is beautiful with the colors of fushia, orange, green, and white. Here is a picture of her bed ensemble from Ashley Furniture.
We still have more to do in her room, we will do more as we have the money to spend. We want to get new hipper artwork for the walls, she needs a bookshelf for all her books (this girl loves to read) not to mention a place for her pet longhaired hamster, Nugget. Ashley loves her room, she helped paint it and she helped rearrange her furniture. We even talked Ashley into getting rid of all of her stuffed animals. We now have two bags of cute little stuffed animals to donate to the children's hospital and/or sell in a garage sale. Our next project is Ashley's closet. Hopefully, once we get her room organized Ashley will take more pride in taking care of it. Who am I kidding, she is about to be a preteen...preteens don't know how to clean!!! Anyway, after her room is completely decorated, I will post a picture.
As Ashley's health continues to provide us with more questions than answers we continue to pray. We thank all of you for praying with us and for us.
Right now, Ashley's liver enzymes are normal but her Total Bili is going up but again still in normal range. Her platelets are at 90,000 (normal is between 155 to 450). Her CO2 level is low but not alarmingly low, her BUN/Creat Ratio is high, her WBC count is low, her HCT low, and Lymphs absolute is low. She also some other values that are abnormal but I have no clue what the values mean. Her C4 Complement is low, her Anton Gap is high. I need to Google those two values to define them. I am sure Ashley's labs will be repeated before the scopes are performed.
Ashley will be having some immunization shots on Thursday. Her liver doc highly recommends Ashley getting all of her shots now rather than later to prepare for transplant. I can't remember what shots she needs but I believe she will be getting the Hep A series, the pneumovax and a couple of others that I can't remember right now.
Here is something that will rip at your heart. Today in the car, on the way home from dance, Ashley told me that she would probably be happier if she died. She said that at least when she is dead, she wouldn't have her disease anymore, she'd be healthy, no more cough, no more needles or doctors, no more food restrictions and she would be able to do things that she couldn't do when she was alive. I hate when she talks like that, I try so hard to change the subject but she wants to talk about it. She has no fear of death at all, as a matter of fact her image of heaven is beautiful. The way she describes her vision of heaven would make a non-believer want to believe.
It's time to change the subject to something more peaceful; more fun! We are in the process of redecorating Ashley's room. Right now, there is new paint on the wall (Granny Smith Apple Green) and her new bed ensemble is beautiful with the colors of fushia, orange, green, and white. Here is a picture of her bed ensemble from Ashley Furniture.
We still have more to do in her room, we will do more as we have the money to spend. We want to get new hipper artwork for the walls, she needs a bookshelf for all her books (this girl loves to read) not to mention a place for her pet longhaired hamster, Nugget. Ashley loves her room, she helped paint it and she helped rearrange her furniture. We even talked Ashley into getting rid of all of her stuffed animals. We now have two bags of cute little stuffed animals to donate to the children's hospital and/or sell in a garage sale. Our next project is Ashley's closet. Hopefully, once we get her room organized Ashley will take more pride in taking care of it. Who am I kidding, she is about to be a preteen...preteens don't know how to clean!!! Anyway, after her room is completely decorated, I will post a picture.
As Ashley's health continues to provide us with more questions than answers we continue to pray. We thank all of you for praying with us and for us.
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