LIFE ON THE WAITING LIST: December 2013

Monday, December 23, 2013

Dear Ryan

My dear precious boy,You are loved and missed so much. Not one moment goes by that I am not thinking of you. Just as when you were here with me. The morning you left us I was by your side holding your hand. Your sister was there too. Did you hear our voices speaking to you? I could tell your pain had left you and you were in a peaceful place. When you asked me the night before if I would be okay I couldn't understand why you asked that question. Did you know you were slipping away from me? I am trying to be okay and I promise you I will keep fighting for you and for your story to be told.Ryan,you were an amazing young man and I am proud to call you my son. Hailey is getting so big. Yesterday she was sitting on my lap looking at pictures on my phone. When we came to your picture she looked at it and pointed. I said 'that's Uncle Ryan' and she smiled so big!Hunter and Grayson miss you too. Hunter is wearing your favorite shirt! It's a little big on him but he wears it constantly and I believe it gives him comfort. Please watch over us from where you are and wait for me. We will be together again someday soon. All my love ,Mom

Thursday, December 12, 2013

Cause of Death

Mrs. McGee... I'm afraid your son is brain dead... His herniated brain stem collapsed and crushed his spinal column...My body went numb and I wanted to puke. I felt my legs start to buckle..the room was spinning. Somewhere in the distance I heard my daughter scream but she was standing right beside me. I wanted to scream myself but the only thing that would come out of my mouth was NO God NO! I know what 'brain dead' means and I didn't believe it. Just 20 minutes earlier he asked me for the urinal and upon using it he vomited and had a seizure.He made a deep guttural sound and he was gone.That sound I will never forget and keeps me awake at night. Now he was laying here lifeless his head hanging to the side as if his neck were broken. His eyes were open but with a fixed glare. I begged him to speak to me...to move...squeeze my hand... anything. No one told me Chiari could cause brain death. What happened? This is not supposed to happen,I was told something like this never happens! I shook my fists in the air..Please God take me,take me! Not my son! I cried out to my son.. Oh Ryan..mama is so sorry!.. my beautiful brave boy! If only they had listened to us...they saw him getting worse...I begged for help! Why would no one listen? My dear son was not mentally ill. His brain stem was pressing on his spinal cord. My son should not have died. I remember the frightened look on his face when just one week before he was pronounced brain dead the doctor came in his room and announced 'chiari is no big deal..you just need to toughen up'. I hope those words he spouted to my dying son haunt him for the rest of his life!When are they going to listen?...how many more are going to die before the doctors that are supposed to care for us wise up? Cause of death..ignorance..lack of concern for my precious son.

Friday, December 6, 2013

Mothers Day will never be something I will look forward to again. It will hold a different meaning for me now. Ryan was diagnosed with chiari on that day. What started out as a normal day ended with a 3 month long battle of pain and suffering. Chiari came like a thief in the night and stole my precious boy...my joy...my happiness. This disease over the course of 12 weeks ravaged his body...his brain as he often told me 'had turned to mush'. As if that wasn't enough it stole his ability to walk and hold his head up.... swallow,or keep anything in his stomach including water. I sat day after day by his side and watched my son die a slow death. And to add insult to injury it inflicted on him the most excruciating pain you could ever imagine. I hate this thing called chiari! I despise it because it sucked the life out of my child. It hit him so fast and gave us no time to prepare for the worst possible outcome. I will forever dread Mother's Day. On the way to the hospital that day Ryan said ' Mom I'm sorry I ruined Mother's Day'.... Ryan you didn't ruin Mother's Day!....Chiari Malformation did. Ryan was the sweetest most kind hearted young man to have walked this earth. He didn't have to die! MORE DOCTORS NEED TO BE AWARE CHIARI CAN AND DOES KILL!

Sunday, December 1, 2013

Son's death helps save mother's life through organ donation - WSMV Channel 4

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If you are new to my blog and want to know more about Ryan's three month long journey with Chiari Malformation and our fight to save his life I suggest you start with my post from June 3rd 2013 titled My Son Ryan..... Ryan was diagnosed with Chiari One also known as Arnold Chiari Malformation. He also had Hydrocephlaus...Intracrainal Pressure. He underwent brain surgery after being diagnosed but died three months later. All I can disclose at this time is...My son did not have to die. If you or someone you love has Chiari make sure the doctors are Chiari Specialists.

chiari info

Chiari Malformation is a brain disorder where the opening at the bottom of the skull (foremen magnum) is too small and the bottom of the brain (the cerebellum) pushes through the opening. The result is increased spinal fluid pressure causing symptoms from severe headaches, neck pain to paralysis (see other symptoms below). Found by Austrian doctor, Han Chiari in the 19th century there are four types with type 1 being the most common and 4 being the most rare and incomparable with life.

A person is born with CM, acknowledgement of it is the rarity until symptoms make a parent seek help for their child. From regular a doctor checking reflexes and balance to x-rays and Cine MRI's testing for CM takes some time. Some of the symptoms include but are not limited to:

troubles swallowing/sometimes speaking (may lead to growth issues)
severe headaches/neck pain brought on by coughing or sneezing
severe pain in shoulders
respiratory problems/sleep apnea (where the child stops breathing during sleep)
loss of bowel and or bladder control
weakness/stiffness in arms and or legs
loss of motor control (can be paralysis)
balance problems
numbness/tingling in hands and or feet with inability to feel hot/cold
For children, only 1/3 will show up on MRI so the doctors have to rely on information from other testing. These children may also have other conditions such as Spina Bifida (about 30%), hydromyelia (aka Syringomyelia), Tethered Cord Syndrome, spinal curvatures (older children). The number of children that have CM is unknown since they can be asymptomatic for many years.

Cognitive, emotional, developmental and behavioral studies of the effects of CM in children have been done however the inability of children to express how they feel the studies are not well understood. There is no cure, only treatment of symptoms. The diagnosis and treatment can be a strain financially, emotionally and physically on the entire family, a good support system including excellent doctors are a must.

A huge obstetrical is that CM is relatively unknown. Because of this some may ignore symptoms to be associated with "growing pains" or other benign causes. The best thing to do is get your child to a doctor to find out the real cause of the symptoms. If your child has already been diagnosed, fear not because there are many places to get information and support. Also spreading the word about CM Awareness helps you advocate for your child.

IGA Nepropathy

According to the IGA Nephropathy Foundation of America IGA Nephropathy is one of the most common and undetected kidney diseases and occurs when IGA – a protein that helps your body fight infections – settles in the kidneys. This disrupts your kidney’s ability to filter waste and excess water from your blood. Over time, these IGA deposits may cause blood and protein in your urine, high blood pressure and swollen hands and feet. It can appear suddenly or, most often, progresses slowly over many years and can result in end-stage kidney failure. By the time the symptoms of kidney failure occur (swelling in the hands and feet, nausea, fatigue, headaches and sleep problems), total kidney failure is near. When total kidney failure occurs, patients will need dialysis or a kidney transplant. I have had this disease for many years and now am in need of a transplant.

Stages of Chronic Kidney Disease

My GFR is around 10 to 14ml/min and sometimes goes as low as 8ml/min which puts me at end stage....Glomerular Filtration Rate (GFR)

Glomerular filtration rate (GFR) is the best measure of kidney function. The GFR is the number used to figure out a person’s stage of kidney disease. A math formula using the person’s age, race, gender and their serum creatinine is used to calculate a GFR. A doctor will order a blood test to measure the serum creatinine level. Creatinine is a waste product that comes from muscle activity. When kidneys are working well they remove creatinine from the blood. As kidney function slows, blood levels of creatinine rise.

Below shows the five stages of CKD and GFR for each stage:

Stage 1 with normal or high GFR (GFR > 90 ml/min)
Stage 2 Mild CKD (GFR = 60-89 ml/min)
Stage 3 Moderate CKD (GFR = 30-59 ml/min)
Stage 4 Severe CKD (GFR = 15-29 ml/min)
Stage 5 End Stage CKD (GFR <15 ml/min)

chiari angel