12 year old with aneurysm update#2

[lakegeorge_mom]

Abby is 12, and she is in a semi medically induced coma living on machines. She is best described as an obnoxiously happy outgoing pretty preteen who is boy crazy. She loves to play and have fun, she is smart and has good grades, she is well liked in school and is soo much fun to be around. I refuse to say was though I guess that would be appropriate I refuse to give up on her. She is suffering in alot of pain. She is what they call "posturing" tightening up her body in different ways probably fighting the pain. She had a headache, and now she's barely alive. There were no warnings. NONE. It may have been whats called an av malformation, something you are born with that eventually can hemorrhage. The spinal fluid leaking from the rupture is causing more brain damage. Her brain stem was affected they just told us, she may never breathe on her own, she may never eat by mouth, she may never wake up completely. We cant know for sure until we do a test called an angiogram but she isnt strong enough to handle it. She has pneumonia, which is common when you are in a coma, and a staph infection. She is on over a dozen meds, a ventilator and ng feeding tube (in your nose down your throat). She has to have a surgery hopefully this am to put in a trach (hole in your thoat to breathe through), the vent is causing errosion to her esophagus and can damage her vocal cords, if she can even talk. She has to have a feeding tube put in her stomach to save her nose from too much damage, its sore swollen and bleeding a little. Her temps have been as high as 106, mainly 104 all day weds. We are giving her tylenol, no ibuprofen because of bleeding, its not working. She is being ice packed and has a cold blanket. She will blink if you ask if she can hear you, she has squeezed our hand. I love her so much its killing me watching her die slowly. I want to take her shopping for her semi formal, I want to hear her choose between seth or ben for the dance, I want to do her makeup and nails and decide whether we straighten her hair or not. I want to take her outside and play softball with her and my dd Jade. I want to watch her race my fiance who was a big deal track man in his day and listen to his excuses when she beats him or almost beats him.  A part of me still fights that they are wrong, she will run again, she will dance, have a first true love, first kiss, maybe even a family of her own someday. Why would a god make children suffer this way? I want to yell I want to throw things, but I have to put that energy into being strong for the parents, and my dd whos 13, and all of her friends who miss their friend. I am holding vigils and fundraisers and I will be positive that she may come out ok... but its getting harder everyday when the drs give so little hope. I have studied most every religion, my uncle is a pastor, dads catholic, moms presbyterian, I have read the jewish tora, the muslim koran and hadiths, and hindu bagavad gheeta, I have seen amazing things in so many religions that I have to have some faith, but its getting tougher everyday. WHY THE KIDS? WHY not people who have lived their lives? What could these kids have done to deserve this? Why are kids walking or being pushed by me with no hair fighting cancer? Why is a new baby girl undergoing heart surgery when she isnt even 10 pounds yet? Appreciate what you have everyone, everyday because tomorrow can bring anything. Abby was always so healthy, almost never had even a cold, she is always running and playing, has had a few casts but thats normal for athletic kids. She had just been playing volley ball in gym running and playing...20 mins later shes unconscious with a ruptured aneurysm. You never know....love and hug your loved ones.. u just never know.

[lilmom0417]

Apr. 2, 2009 at 8:14 AM

I'm so very sorry you and your family are going through this.  You are in my prayers.

[kristinaleann]

Apr. 2, 2009 at 8:42 AM

that is very sad, she will be in my prayers. God heals, just have faith

[Elyssa414]

Apr. 2, 2009 at 9:30 AM I'm so sorry you are all going through this! It's too awful for words. Spending time at Childrens hospital is a very trying experience... There is no why for these suffering children. It's just terrible. HUGS I will send positive thoughts her way for strength and healing.

[woofwoofwoof]

Apr. 2, 2009 at 9:39 AM

So sad, you all are in my prayers.

[AndysQueen]

Apr. 2, 2009 at 12:07 PM

I am so sorry Abby has to go through this. She is in our prayers. And thank you for sharing this story....I have a 4 year old little boy who has battled migraines since he was just 2 years old. Abby's story makes me realize I need to continue to push his doctor to check him and re-check him, I could not handle seeing my child in a state like Abby's. Thank you!

[Imamom4sure]

Apr. 3, 2009 at 4:19 AM this is something that I will never understand, children should live, I have experienced too much death, this family doesn't deserve this kind of suffering, please god restore this child,