LIFE ON THE WAITING LIST: February 2016

Tuesday, February 2, 2016

Middle of the night thoughts of a grieving mother

Life is much less meaningful now. I don't know any other way to describe it. Things I will never have the joy to experience because my only son was taken too soon, the what if's. The grandchildren I won't have. Would they have looked like him? I am left with longing and yearning for what could have been. It's not fair. But even more I grieve for what Ryan lost. At the ripe old age of 20 to be gone in the blink of an eye. The things he never had a chance to experience. I hurt so much for him. It feels like a punch in the gut.

My son was taken from me and my faith was destroyed. My faith in the medical profession is now non existent . I fight for answers and accountability but the process is long and drawn out.
I struggle with day to day activities. Just getting out of bed some days is difficult . But with everything in me I pull myself together and continue on this journey .
I will not let it destroy me because I am Ryan's voice now. It is up to me and Ryan's dad to get answers as to why our son is gone. Why were our pleas for help gone unanswered and dismissed? Why after decompression surgery was his brainstem even more compressed ? And so bad as to cause his braindeath?

Ryan,
You were a beautiful chubby cheeked happy baby. Your Dad nicknamed you 'butter bean'. You had the biggest and bluest eyes that captivated everyone around you. You were and still are loved so very much. You grew into a gorgeous young man. Broad shoulders. Dark mop of hair that somehow always managed to fall over your eyes. You had a shy smile and you turned heads when you walked into a room. Gentle,kind and respectful of others. I am so blessed to have known you my son. To be your mother was a gift. You had a great sense of humor and made us laugh at your silly voices and dance moves. Oh my, how you had us rolling in laughter. We haven’t laughed like that since you left us . The light of our life. I know you are watching over us now. Your light is infinite. And so is our bond.
Love,
Mom,Dad,Sissy,Glen,Hunter,Grayson and Hailey

I have grown old. The lines on my face tell a story. A sad story of pain and grief. Seeing my only son die right in front of me. I have grown old. The dark hollows underneath my eyes are from sleepless nights and many tears. I have grown old yes, but I have also grown strong. I have seen the worst and experienced the unfathomable. What else is there to fear? Certainly not death. I am now fearless. I am a grieving mother.

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)

LIFE ON THE WAITING LIST

chiari angel

Sunday, February 28, 2016

Tuesday, February 2, 2016

Middle of the night thoughts of a grieving mother