10/15/10

          Every morning, before I go to work, I check my facebook.  This morning I saw this posted on the Aid for Ashie page...

          "Please, pray for Ashtyn. We need a miracle.  She has a Gram-Postive infection in her lungs as of late last night.  The doctors accidently left a guide wire in her artery The guide wire is for the dialysis catheter that they put in her neck.  I don't know if that's the source of her new infection or not.  Please, pray for a miracle."

 

          It's lunch time at work now and I checked my facebook again, and saw that Karena (Christine & mine's sister/Ashtyn's Aunt) posted this...

 

          "Leaving a F___ING GUIDEWIRE IN HER ARTERY????  ARE YOU F___ING SERIOUS??  I AM SO OVER TEMPLE.!!!!!  I AM COMING IN YOU DUMBASSES!!!"

 

          Do you know my sister Karena like I do?  Yes, she is pushy.  Yeah, she is a little bossy.  You do not want to get on her bad side, but it's awesome having her on your side.  Today she is flying up and will be here until Sunday.

 

          Go, Team Ashtyn!

Texts from Christine (Ashtyn's mother & my sister)

- 9/21 @ 0903: She desarurated to 80 a few minutes ago.  Hemoglobin 6.5.  They are giving her 2 units of blood.  She has mucus & blood in her airways

-9/21 @ 2103: Saturation @ 93

-9/22 @ 2329: To my family... Ashie is stable tonight.  please get some sleep everyone.

-9/23 @ 1327: To my family.  Ash is stable today.  Oxygen @ 90%, Peep 15, Pressure in the 400s.  would like pressure in the 500s, volume 28.  

(Note I don't know what half that means)

-9/23 @ 1350: We need her lungs to be in the 500s.  They have to be plyable & soft

-9/24 @ 1500: Bump in the road again.  Upper left lung collapsed, Saturation @ 92%

-9/24 @ 1543: Taking to her interventional radiology for her chest tube to be closer to her heart.

-9/24 @ 1749: She's out og radiology.  Haven't been allowed to see her yet.  They said she's okay.

-9/26 @ 1301: Tomorrow they are going to do surgery to put a J & K tube into her stomach for feeding her.

-9/27 @ 1024:  Can't do surgery.  Right lung collasped

-9/27 @ 1131: She is stable

-9/27 @ 1249: WBC count went down to 30000mm3

-9/28 @ 1010: She's having another chest tube put in

-9/28 @ 1429: Taking her to interventional radiology now.

-9/29 @ 1503: She's doing okay.  She's in a lot of pain with her 4 chest tubes.

-9/29 @ 1543: Ear, Nose, & Throat doctors said she looks better than last week

-9/29 @ 1557: Took the drain out of her back

-9/30 @ 1017: Ash had a good night

-10/1 @1503: She has to get a stitch or two in her back where the drain was.  She's leaking spinal fluid.

-10/4 @ 1448: Praise  God, The blood clot in her right arm is gone!

-10/5 @ 1647: They have to put a camera down her breathing tube and make sure nothing is in her lungs.

(Nothing was, she was just having troubles)

-10/5 @ 1654: She didn't look as good this morning

-10/5 @ 1657: They thought there was blood in her lungs

(There isn't)

-10/6 @ 1208: I'm smiling.  Thank you God.  He rWBC is 15000mm3

-10/7 @ 1418: WBC @ 11000mm3. WooHoo! she's on assist control on the vent since 9am.

-10/7 @ 1430: Very excited.  I'm thanking God in advance for her healing.

-10/8 @ 1359: Ashtyn's WBC is 9000mm3!

-10/11 @ 2104:  Came home to get a shower.  Going back to the hospital  and spending the night.

(The Nurses moved Ashtyn to clean her up.  Every time they move her she desaturates but, only a little bit and for a little while.  This time, she didn't respond so well.  The doctors told Christine that Ashtyn's Satuation dropped to the 70s.  In reality, it was in the 50s.  When in the 50s, she could suffer brain damage.  Not saying that she did, but it is possible.  The Doctors asked Christine & Don to stay the night, because they didn't know if Ashtyn was going to make it to morning)

-10/11 @ 2105: I'm having a hard time dealing with this.  Please forgive me.  Please pray for lungs to heal.  I'm begging you.

-10/11 @ 2334: HR 132, Saturation 99%, BP 103/57

-10/12 @1240: HR 122, Sat 100%, BP 104/55.  It's her 20th birthday today.  We are having a tough day.

-10/13 @ 1408: Sat 100%, HR 115, BP 112/57

(Some time around 1900 The main Pulmonary Doctor came into Ashtyn's room to talk to Chris & Don.  This Doctor, I don't know his name, told them to say what they want to say to Ashtyn.  He was on 24 hours left on his rotation, and he won't be back until the end of October and he doesn't know if she'll make it until then.  He also said that he has had 80 different patients in the same condition and one, who was much older than Ashtyn, spent 8 months on a ventilator, survived, and is doing fine.  He didn't say that she was to far gone, just maybe we should make peace)

-10/13 @ 2016: Going to sleep in Ashtyn's bed now.  I'm begging God to Save my baby.

-10/13 @ 2026: Overwhelmed with grief

-10/14 @ 1538: Physical Therapist just showed me how to do Physical Therapy with her.

Let's bring you up to date

-Ashtyn had pnemonia in both lungs.

-They (The Doctors) put a breathing tube down her throat (Intubation).

-With Intubation comes a paralytic drug, basically medically induced coma. 

-At some point later she needed to be placed on dialysis, because her lungs couldn't oxygenate her blood well enough.

-They wanted to remove the tube going down her throat and put in a trach tube for her to breathe through.

-When doing so, a piece  of harden mucus fell into her lung and cause her WBC to sky rocket.

-Then her lungs started collapsing.

-She now has 3 tubes in each lung keeping them inflated.

-Though she is on assist, she still has ARDS

-I'll work on this more later...

beers and unplugged music for everyone

Ashtyn's battle with Chiari

          Ashtyn was diagnosed with Chiari Type 1 Malformation on July 10, 2010. It is a congenital condition in which the lower portion of the brain known as the cerebellar tonsils hang below the skull opening into the spinal canal. This can result in severe headaches, difficulty swallowing, visual disturbances and coordination problems.

          Ashtyn had brain surgery on July 19, 2010. She spent four days in the hospital and was sent home.

          On July 26, 2010 she was back in the hospital with a meningitis caused by a Staph (Staphylococcus aureus) infection

          She also developed a Cerbral Spinal Leak.  She spent 23 days in ICU and then was sent home. 

           Two days later she was admitted back to the hospital. The bacterial meningitis returned stronger than before.

           As of September 15, 2010, Ashtyn developed pneumonia and has another cerebral spinal leak.

Ashtyns First battle. Her essay on it

This is Ashtyn's Essay, on her first battle.  This is her own words.

          I have a deep resentment toward a chronic illness I have. I have been diagnosed with a disease called Gastroparesis. Gastroparesis is a condition that affects the ability of the stomach to empty its contents, but there is no blockage. Symptoms of my disease is abdominal distention, nausea, premature abdominal fullness after meals, unintentional weight loss, fatigue, abdominal pain and vomiting.

          I have been to numerous doctors and hospitals hoping to be cured. I was told there is no cure for my disease. I had two surgeries last year and it didn’t help my condition. I am on experimental medications prescribed by my doctor that are not sold in the United States. Two weeks ago, I had surgical procedure in which the doctor injected botox into the outlet of my stomach. I still do not feel better.

          This disease has controlled and ruined the last two and a half years of my life. I was not able to attend my Junior and Senior years of high school. A teacher came to my house three times a week to teach me. I was too sick to go to school or do any other social activities. I was a competitive Level 8 gymnast and had to retire. I couldn’t even hold down a part time job at the mall. I am so sick every day, that it is a struggle for me to go to college. I have always wanted to be a chef, but it will be difficult for me to eat or taste the food I will prepare.

          I want to have a career and life that I have always dreamed of. It is my hope that scientists will discover a cure for my disease. The Gastroparesis Patient Association for Cures and Treatment has put together a petition that the organization plans to present to Senator McCain regarding funding for gastric mobility disorders. I have signed that petition with the sincere hope funding will be granted to discover a cure for me and others like me.

          Throughout the last couple of years, I have witnessed the dedication and devotion my parents have bestowed upon me, as my parents have struggled to help me through my illness. The countless doctors appointments and trips to the emergency room in the middle of the night. I have watched them struggle to pay my medical bills and my prescription drugs. I have listened to telephone conversations as my mom fights with the insurance company to get them to pay my bills. My parents have lost days at work, sometimes without pay to take care of me. My love for my mom and dad has become stronger every day.

          I have a boyfriend who has been by my side while I struggle with my disease. I think most guys would have walked away. He holds my hand while I lay on the couch in horrible pain. He is patient with me while I struggle to eat a morsel of food. There are many times that I haven’t eaten anything in days. He sometimes gets me to eat, but afterwards I am usually sick. I have lost 40 pounds over the last couple of years. Food is the source of all my pain. I have cancelled many dates with him, to sick to go anywhere.

          There are days when I feel sorry for myself and I ask God, “Why did this happen to me? What did I do to deserve this illness?” The only answer I hear in return is silence. Maybe God has a plan for me. Maybe I am supposed to go through this so that I can help others who are like me. I tell myself I must have faith in the unknown. I must have faith that scientists will find a cure for this debilitating disease. Without faith and hope I have nothing. Maybe I am supposed to become closer to God through prayer and worship. I just wish God would hear me and help me. I will pray to Him everyday and ask Him to make me well. I must live my life with love, hope and faith that someday I will be healthy again. I must take one day and a time and not let my disease rule my life.

Since Birth, she was a fighter.

     Ashtyn Jeanne Mulherin was due to be born on December 8th, 1990. She had some other date in mind. She was born, two months premature, on October 12th, 1990.

     She was put into an incubator with a breathing tube. She kept pulling out the breathing tube, not because she was giving up, but because she, as an infant, felt like she could do it on her own. A personality trait she never let go of.

     She came home, to an excited brother (D.J.) & sister (Alyssa), after being in the hospital for two weeks.

      A complete family. The day Ashtyn, finally, came home.

Introduction to this page

          I am creating this private blog to let the people, who can be trusted and, who want to know what is going on with Ashtyn, know.  I am not allowed to post anything negative on Ashtyn's facebook page ("www.facebook.com/pages/Aid-for-Ashie"), which I created.  By negative I mean, if she de-sats, has a lung collapse, dialysis, drugs, heart rate, etc...