Going Home.........

After 187 days in the hospital Sadie was finally ready to go home.......

But were we ready? Not at all, not even close.

How do you prepare for this? How do you know what to do?

I have no answers. I have no idea what was going to happen but what was the alternative, send her to a care facility? No, not my child. We would figure this out someway. I mean we were not the first family going through this and sadly we wouldn't be the last. Maybe it would have helped to talk to someone else that had been trough this. But that didn't happen. Nothing can prepare you for taking your child home.

The staff at the hospital goes over everything with you before you go home and of course I had been there with here for her entire stay so I should be prepared. Well yes I guess in a lot of ways I was but it is easy to feel that way when you are in the hospital~ Anything goes wrong you just call for a nurse.

On August 21, 2006 Sadie was released from the hospital. She went home with a IV line in her arm, her feeding tube, her suction machine and 2 tons of supplies. She needed to be watched 24 hours a day, moved every hour, fed every 2 hours, changed every couple of hours, her IV needed to be flushed once a day, etc. How on earth is this possible? How can we do this?

Maybe it is the lack of sleep, maybe fear but no matter what it is you start to second guess your every move. But the alternative is not a possibility! How can you even entertain the thought of putting your child in a care home. Could they take better care of her? Would she be better off there?

The answer was always a resounding no! She is part of me, she is my child, she is my heart. I couldn't even imagine leaving her with strangers. She could no longer walk or speak, she would be so alone, so scared. This is not the life she fought so hard for. She fought to be a part of our family, to be loved and cared for by us.

So with the help of my mother and her husband we care for her the best we can. Stumbling through all of this mess. Learning from our mistakes and making ones that we never thought of. There are no right answers and each special needs child is different. You do the best you can for your child and hope that is enough.

Going home was just the first step in our new journey

Where do you find your strength

Hour after and hour of sitting in my daughter's hospital room watching her fight for her life.....4,488 hours to be exact. I watched Sadie go through things that nobody should ever have to deal with - EVER! My 8 year old daughter fought so very hard to stay alive when everyone said she would not survive. Why? Why would you want to suffer and struggle so hard to stay here when leaving would have been so very easy. As her mother I wanted nothing more then for her to stay, only for selfish reasons of course. I could not imagine my life without her, I would not even let that thought enter into my head. But as a person I could not say that I would have fought so hard to live. No, I think I would have given up and taken the easy way out.

The pain that she endured is simply unimaginable both physically, mentally and emotionally. She had so much taken from her in a matter of days and then months and months of pain. Trapped inside her body, dependent on others for everything.

Shortly after Sadie was transferred out of the Intensive Care Unit, her sister and I were spending some time alone talking. She asked me "Mom, why didn't you just let her die?" I swallowed back my tears and replied "That was only a choice that your sister could have made and she is not ready to leave us." Her sister said "Mom, why would anyone want to live like this, why would you want to live this way. My sister is gone, she is someone else now ."

In many ways she was right, this was not the same Sadie that entered the hospital 60 days ago. The first 2 months I had just been on auto-pilot and had not stopped to really grasp what all of this meant to the rest of our lives. This was not the same child and would probably never be again. How do you deal with that? There is nobody to help you deal with this, there is no rule book. It is like dealing with a death, I had to morn the loss of who she use to be. My child was now a different person.........or was she?

Denial..........

On February 24, 2006 Sadie had been in the hospital for 7 days. She was very weak but still in good spirits. The doctor had just cleared her to start eating solid foods again and she seemed to be responding to the antibiotics finally.

She had been drifting in and out of sleep most of the day but was fully aware of what was going on around her. Or so we thought.......later in the evening Sadie started looking around, smiling and reaching out with her hands. I asked her who she was looking at and she responded " The grandma, can't you see her mommy? She is standing in the hall with the other man." At that point I asked her if she knew where she was and she said that she did. She knew who I was and who she was. I informed the nurse that she was "seeing" things and the nurse responded that it must be the "meds".

When I asked what they wanted she just smiled and said "Mom, they want me to take their hand and go with them." I held her for several hours and told her that I needed her here and wasn't ready to let her go. She drifted off to sleep and I finally laid down for a couple hours of sleep.

Saturday, February 25, 2006 was one of the worst days of my life. Sometime in the wee hours of the morning Sadie had her final stroke. Her ability to talk or move had vanished and now the only thing she could do was look around, my daughter was trapped inside her own body.

I really cannot tell you what else happened that day. Lots of tests, tons of doctors, family and friends waiting for some glimmer of hope. It was like I was standing still and the world was still moving at full tilt around me.

The doctor on rotation was a tiny, fresh faced woman that looked like she should be picking out a prom dress not trying to save my daughter's life. For the rest of my life I will never forget the words that came out of her mouth that day. She pulled me out of Sadie's room and said "You do realize how sick your daughter is don't you? You need to start to prepare for the worst, but pray and hope for the best."

WAIT?!!! WHAT?!!! Is this woman telling me that my child is going to die?? No No No No No No No!!! All I can do is pray and hope?? You are kidding me, right?
Enter denial.................
Denial is a wonderful thing. I would not, could not let myself believe for one moment that I wasn't going to bring Sadie home.

They were wrong, they just had to be! God could not be that cruel. How could my baby be dying right there in front of my eyes? No she wasn't dying, she was not dying not my beautiful, strong willed daughter. She would survive, she was not done here.........not yet!

Sadie's Story

Sadie Cheyenne was born on October 22, 1997 and she was in a hurry from the moment she took her first breath. Her development was normal until she was about 14 months old. She suffered from a grand mal seizure caused by a high fever. After her recovery her physically development continued at a normal pace. However, she did have learning disabilities including dyslexia and delayed speech. Sadie was never embarrassed by her disabilities nor did she let them stop her accomplish anything that she set her mind to. By the time she was 8 years old she was preparing to test for her brown belt in Tae Kwon Do.

What was extraordinary about Sadie was her zest for life, her huge heart, her sense of humor and her amazing will. She had the ability to make friends wherever she went, she took in stray animals and her dream was to become a Vet. Sadie even became a vegetarian at the age of 7 because she couldn't bring herself to eat animals.

In early February 2006 Sadie became ill with flu-like symptoms. After 5 days of being ill she starting feeling better and was ready to go back to school just in time for Valentine's Day. She then took a turn for the worse again and on February 17, 2006 we took her to the emergency room. She had become extremely weak and her fingernails began to turn purple. After spending 12 hours waiting in the ER at Saint Louise Hospital in Gilroy she was seen. Sadie was admitted to the hospital and the doctors began running numerous tests trying to diagnosis the illness. She was seen not only by a Pediatrician but also by several specialists. Their first solid recommendation was that she may have a slight tear in her appendix and that it was leaking toxins into her body. On Monday February 20, 2006 they preformed an appendectomy and also removed several lymph nodes for testing. It was clear to the surgeon immediately that her appendix was not the cause of her illness. Sadie's pediatrician felt that she needed to be transferred to a hospital with a dedicated Pediatric unit. On February 21, 2006 Sadie was transported to Santa Clara Valley Medical Center in San Jose, CA and admitted to the PICU (Pediatric Intensive Care Unit).

After being admitted, Sadie received the first of many Lumbar Punctures (Spinal Tap). Within 2 hours the doctors confirmed that she had Meningitis. Unfortunately it took another 7 days to determine that this was not a common form of Meningitis. She had contracted Coccidioidomycosiss, an airborne fungal spore commonly referred to as "Cocci" or Valley Fever. It is usually a respiratory disease but in Sadie's case, which is 1% of all cases, it entered into her spinal fluid and caused her to contract Meningitis. Within 2 days of her diagnosis she suffered three strokes due to extreme inflammation of the vascular system and meninges of the brain. The strokes caused brain stem damage and blocked the "information" from her brain to all parts of her body. Sadie became a quadriplegic and was left without speech or the ability to eat. She underwent surgery to relieve the pressure to her brain and had an external shunt for 8 days. She eventually had a VP shunt placed in her head and a permanent GI Feeding tube put into her stomach. She had daily lumbar punctures for over 3 months in order to administer antibiotics directly into her spinal fluid.

She was in PICU for 55 days and in Pediatrics for 125 days. Sadie was released from Valley Medical Center on August 21, 2006 after a total hospital stay of 184 days.

This is where our journey began....................