I'll never forget the first time I over heard a member of one of Ashley Kate's medical teams use that term when referring to my daughter. It offended me. Kind of like the time they shared with us that she was officially "failure to thrive". Again, I was upset. Call me protective, blind, or just stupid, but I wasn't ready to have people say and record such ugly things about her. Guess what? I'm still not. Swallowing these words, accepting them, has proven to be one of the harder things I've had to do over the last few years. Chronic. I hate that word. Chronically ill. I hate that diagnosis even more.
Chronic. That's what it has become. Chronic vomiting. Its not normal. Its not something that happens occasionally with an upset stomach. Something inside of her causes vomiting. Chronic. Continuous. Violent. Damaging.
It can occur out of nowhere. She's fine one moment and then the next I glance at her and begin to run for towels, blankets, clothing, whatever I can find to try and catch the aftermath that I know is on its way. Its amazing how I can catch a glimpse of her face or a hear a certain cough and announce, "She's going to throw up, hurry". Then the whole house starts running trying to collect something, anything to help with it all.
This whole vomit issue is a mess. Literally. It has destroyed her teeth. The content and acids from her stomach have eaten cavities into her teeth. They are ruined. Honestly, they are. She has a dental appointment one month from today. I have no idea if they can do anything to help, but we have to have the cavities dealt with before they start an infection we can't recover from. I see the damage to her teeth and I wonder what her inside look like. Her throat? Her esophagus? Her stomach? Her intestine? I know damage is being done. She screams before and after each emesis. She cries hard from the pain. She signs "hurt" over and over again. Its happening each and every day. Multiple times a day. Its happening all throughout the night. Multiple times. This morning between 4-5 am she vomited more times than I could count. Her daddy announced around 4:30am "Something has got to be done. She can't live like this!" I agree. She shouldn't have to.
I've tried to get a scope and biopsy scheduled today. No luck. The earliest they will see her is April 20th. That's not soon enough. They told me our transplant team could always call and speak to the doctor themselves. "Ok, thats exactly what we will do. I'll let them know." So tomorrow I will call the coordinator and let them know they refused to help us any sooner. Oh, did I mention they aren't saying they will scope her? They said they will bump her May 1st appointment to April 20th and then decide if they agree she needs a scope. Hmmm... that just doens't work for me. Yesterday I was assured by our transplant coordinator that a scope was necessary, the surgeons were recommending it, nothing could be determined to help Ash until one was performed.
Honestly, it has got to get easier at some point. Omaha, Nebraska isn't a mere 2 hour drive. Its a 14 hour drive. Not really condusive to scheduling our appointments there. I'm so tempted to try and switch back to our old team in Dallas. We were trying to make life a little easier by getting a team closer to home, but I don't know what to do when your first "line of defense" in a bowel transplant patient is the GI doctor and he doesn't want to see her. This isn't the first time its happened. Its happened multiple times. We need a pediatric GI specialist who is willing to take on a transplant patient and who actually has time to do scopes and biopsies when they are needed not when they are convenient. If you know of one PLEASE send me a message. We need help.
We are asking everyone we know to pray about this vomiting. It has to stop. We are one inhale away from life threatening issues. It is so dangerous, so stressful, so difficult. Please join us as we ask the Father to change this for her. All we can do is ask. It doesn't mean He will, but we're asking anyway.
Some of you have guessed that I'm having a hard week. Yep, your right. Its all related to this new evaluation coming up this Friday. I wish I could say that I have accepted all the issues Ashley faces, but I haven't. When dreams die it hurts. Plain and simple. Figuring out what new dreams I need to be dreaming for my daughter is difficult. There are lots of "big pills" coming our way and I'm afraid that swallowing them is going to be even harder than those words "chronic and failure to thrive" have been. Just issues I'm constantly trying to work my way through as her mom. Along with all of these issues comes the internal tug of war between my deep felt gratitude for what she has, is and has been blessed with, and the longing that remains for a "normal" life for her. I'll try and explain this last paragraph in another post in coming days. Just wanted you to know that I appreciate those of you who are reading through the lines and praying for the grace we need to make through till Friday.
Also wanted to let you know that she signed the word, "Mommy" today for the very first time! Next to the first day I actually heard her say that word it was one of the sweetest moments of my life. I knew she knew the word, she was just too stubborn to use it. Today, she did. She signed, "Mommy, bye-bye". It made tears sting my eyes and a smile cross my lips. I love this girl and I love being her mommy.