LIFE ON THE WAITING LIST: Bucket....

Wednesday, May 7, 2014

Bucket....

When I was thinking of a title for this post I thought of the last word my son said to me before another tonic clonic seizure shook his body and rendered him brain dead. I was sleeping on my cot beside Ryan's hospital bed as I had done night after night never leaving his side. It had gotton to a point that he would get extremely upset even if I went into the restroom that was only a few feet away from him . I did everything I could to stay in his eyesight or at least earshot to reassure him I was still there. August 10th at 5:30 am I awoke to him moaning. Jumping up from my cot in a panic I could tell this was a different kind of sound coming from my child and something I can never forget. It haunts my dreams. A deep death rattle. He managed to say 'Bucket' and I knew what that meant. For weeks and weeks after the surgery he had vomited what appeared to be spinal fluid and stomach bile on a daily baisis. So much so that he had started keeping a bucket by his side at all times. Nothing helped his nausea. This was always followed by a seizure. And on that morning this is what happened....Bucket...vomiting...seizure..and just like that ..my baby...my world was gone. It was as if someone came in the room and turned out the lights. My world went dark and gray...all hope was lost.

Family and friends showed up as we gathered around and prayed Ryan would respond to us. I begged and pleaded for him to blink or squeeze my hand. But there was nothing. He was taken to surgery with a 1% chance of recovering. It was not meant to be because God had a different plan for my son. We were about to find out very soon what that plan was. In keeping with Ryan's wishes his organs were to be harvested to save others from dying including me. What love my child had for others! He was an amazing young man always thinking of the needs of others. My beautiful son was pronounced brain dead the following day. Alone...my husband still in critical condition from his attempted suicide and unaware our son had died....I sat by Ryan's bed. I remembered when he was a baby and holding him...looking into his big blue eyes and thanking God for blessing me with another child. And now God was taking him away from me. I took Ryan's hand and told him how much I loved him and how brave he was. I told him it was okay to go ...that his grandma was there in Heaven waiting for him. I placed my Lord's Prayer bracelet in his hand then I pulled up this song on my phone and holding my son for the last time in my arms I quietly played it for him....Outside his room I could hear a nurse crying.

I can only imagine
What it will be like
When I walk
By your side

I can only imagine
What my eyes will see
When your face
Is before me
I can only imagine

Surrounded by Your glory, what will my heart feel
Will I dance for you Jesus or in awe of you be still
Will I stand in your presence or to my knees will I fall
Will I sing hallelujah, will I be able to speak at all
I can only imagine

I can only imagine
When that day comes
And I find myself
Standing in the Son

I can only imagine
When all I will do
Is forever
Forever worship You
I can only imagine

To be continued....

5 comments:

magenraeNovember 28, 2014 at 5:58 AM
Zona, you may not remember me but I was Ryans nurse his last 2 nights at the hospital. I just wanted to let you know I think of him often. Ryan and what happened to him had a huge impact on me. I still remember that morning vividly and wish there was something I could have done. I cried my eyes out when I heard on the news that you received his kidney. I will continue to pray for you and your family.
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UnknownMarch 26, 2016 at 9:51 AM
My heart goes out to you it breaks for you and Ryan. I live with chiari myself and the docs don't know squat I keep getting worse I don't understand. I'm to the point where my head hurts constantly I throw up constantly I forget where I am and simple things I used to do daily I sometimes forget how to do I stay so dizzy I can't turn around fast or go around curves without feeling like I'm falling I don't want to die I have two daughters to raise and no one seems to understand what I'm going through. My mother doesn't care and my daddy is so scared he won't task to me about it I'm so scared and alone
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UnknownApril 26, 2016 at 10:16 PM
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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

Wednesday, May 7, 2014

Bucket....

5 comments: