Sunday, April 24, 2016

Possible Diagnosis and Updates

Kreed has been in the hospital, for the most part since February. He first presented with an inability to walk. Followed by a seizure. Followed by more raging and screaming, no sleeping and a slew of other issues. Kreed's breathing began to be affected and doctor's couldn't figure out why. We finally got a resident to think outside the box and he slowly but surely put together the specialists and got them to talk to each other. Ultimately it was decided Kreed's issues were caused from pain, which we agreed with. He was in immense, unrelenting pain. Kreed has been screaming for months in pain. It's been heart breaking to witness and be a part of. His body is constantly hurting, with activity making it worse and he's going hypoxic as a result.
Neurology came to do a larger work up and determined he most likely has Small Fiber Neuropathy along with his larger neuropathy. The small fiber neuropathy is far more painful and affects so much of the autonomic system. What they don't know is WHY he has small fiber neuropathy. It can be congenital or acquired. If it's acquired and they can find why, he will go back on IVIG. If it's congenital then it means it will continue to progress and he will continue to lose function and we are left with only controlling his symptoms and pain.

At this point in time, pain management is the focus of treatment while they work on finding the cause and can do more targeted treatment. Kreed's pain management is compounded by the vast allergies he has and adverse reactions to many. We have trialed activist for two days and both days he raged in pain. Last night in particular, we let him go around on a scooter and take a walk downstairs. Within 30 minutes of our adventure, he was in horrific pain for the next hour and a half until he got a rescue medication. He finally fell asleep in the early hours of the morning exhausted from pain and activity.
I can write all of the above and not shed a tear. But the reality is our life will never be the same. Kreed's life will never be the same. He could end up in a wheelchair for the majority of the time due to his extreme pain when walking, if they can't control it. They could find the cause and then we will have multiple IV treatments a month and hope it stops the progression. Most agree however, that Kreed's days of carefree hopping are over. We have to be vigilant over his activity levels and always be prepared for pain breakthroughs. Kreed is now a patient of chronic pain. Most normal adults have difficulty with ongoing pain and this has happened to our 18 year old active boy who doesn't understand that activity causes him massive pain. I'm trying to figure out how I can possibly explain this to him. Once he isn't in as much pain, I'm hoping we can resume home schooling and our first subject will be about the body.

Most of all, I told the doctors, we have to save his hands. He cannot lose feelings in his hands because that is how he talks. I will move heaven and earth at that point to make sure he doesn't lose his ability to use his hands to talk. Our life has become a nightmare of hospitals, doctors and pain. Our sweet boy suffers so much and it's not fair. I envisioned an active life with Kreed with many hours of hiking in Colorado and so many other activities.
I will post more later. For now, Kreed has small fiber neruopathy and they are trying to find the cause and decide on a treatment. In the meantime, at this time, Kreed cannot be active without causing himself unrelenting pain. It is unknown how long we will be in the hospital, but I would imagine another week at the minimum.

Monday, April 18, 2016

One Day

Everybody always wants updates on Kreed. I've avoided it for days. We have been in the hospital for 19 days, 40 days overall since February. Kreed is a medical mystery. They don't know why systems are failing on him. He now has decreased urine output and wicked different colors of pee but his kidneys are normal. He still has periods of low oxygen. When he stands or walks he's still in extreme pain. Nothing has changed. Tests have been done. Nothing is found. There is no treatment. 
We have a care conference on Thursday to try and figure all this out. 

Meanwhile our hearts break. Our sweet boy who loved to hike is replaced with a boy in pain who doesn't want to get out of bed. He has deteriorated so much. I cry at night when no one is around because I can't even believe this is our life. Every day I sit and wait and help hold him during rages or advocate for his care. At night I research everything I can possibly think of and more. 

I'm exhausted. My muscles ache. I'm sad. I'm angry. I'm everything. Kreed is in pain. He's sad. He cries. He rages. It's never ending for him. 
I miss the sunshine. I miss him playing sports, coloring, swinging, hiking and loving his life. I never wanted this life for him. I wanted a life full of love and light and happiness and joy. Not pain and suffering. We have worked so hard on so many things to make sure he will have a good life. But now this year I have only been able to watch him be in pain and suffer. 
Idon't know how a normal life will ever come. I don't know what will make him better. I don't know what will come of our life. 

I am so broken for him. I am so sad for him. I am so angry for him. But I will never stop fighting for him. One day he will feel the sunshine again. One day he will want to hike for hours again. One day he will not be in pain. One day he will smile and have fun all day. One day

Saturday, April 2, 2016

When We Need Autism Awareness

It's World Autism Day but you probably won't see me wearing blue today. I'm wearing whatever shirt I could grab in my sleep deprived state that I won't mind will be covered in food, pee or blood or all three. I probably won't have a light bulb that's blue because we haven't had time to shop these days or to take the time to screw in some light bulbs to let our neighbors we support autism awareness. I think they are pretty aware when they hear our son's screams or rages in the driveway 

April 2nd is not when I need autism awareness or to spread it. I need it when my child is in pain and decides that destroying his body is a better idea and he bashes his head into the floor. 
I need it when my son has a new health mystery because he can't tell us what's wrong and he screams and hurts himself in pain. 
I need it when he is up all night, throwing his Bipap off, having behaviors or just not wanting to sleep. 

I need it when we are alone fighting for service for months on end. While he's medically unwell and hurting himself and we have no help, no respite and no break of any kind. 

This year we are in a hospital fighting for help for him. He is battling hypoxia and a host of issues and has to have two staff with him at all times and restraints on his bed. Are you aware that this is a reality of many of our children? They can't tell us what's wrong so everything has to be tested and thought about. Their behaviors can increase as a result of pain and sickness to levels you've never seen. I need autism awareness at these times too and hope for doctors who will understand and see more than just behavior. 

We need autism awareness in those dark nights where our tears fall and we wonder how we will ever make it through another day and with no help. We need autism awareness when we have to put a UFC helmet on our kid to stop him from banging his head to the point of brain damage. We need autism awareness when we have to get gloves and other protective equipment to protect him from severely injuring himself. 
Where is the awareness then? Are people aware of this kind of autism. Kreed is a blessing as himself, but his autism part is not. Kreed and autism are not one in the same. It keeps him from communicating and living even a semi normal life and instead he rips his body apart. Do you know what it's like to watch your child literally rip his toe nails off with his teeth? Are you that kind of autism aware?
We accept our son for who he is and fight like hell to get him the right kind of help so he can relax and enjoy his life instead of being racked with pain, hurting and not in control of himself. We work like hell to have him live his life in his own way and do the things he wants. We advocate for him and give him all the tools necessary to be successful. 

But the world is not aware. As families continue to have to fight for necessary services and often do this alone or have to fight he medical establishments for correct treatment or even schools to provide something as basic as a communication device so they may have a voice. When I don't hear about these stories anymore, I will know the world is more aware. But one day isn't going to do it. Not even close. This is why we document and share Kreed's story. It's real. It's uncensored. It's our truth our life. 

And states need to wake up and add autism to the list of conditions for medical cannabis. We wouldn't even know what to do if we hadn't been able to try Kreed on cannabis. It relaxes his ravaged body. It stops his head banging. It stops his biting and hitting and hurting. It helps his medical conditions at the same time. So when 48 states deny families the opportunity to see what their child can do just by using a simple plant, we are not autism aware. 
So no, we don't light it up blue or wear other autism colors. Because we still sit in dark moments and working like hell to save our son and give him a better life. We work every day to make this happen and we spread awareness every single day of our life and turn the camera on to show every meltdown, every failure, and every triumph and amazing moment. That's how this world will become more aware. When the world can see autism and not just hear about it. When the world can see what our kids are capable of when given the right supports and quit fighting us on giving the right supports, that's when this world will be autism aware. But seeing blue and knowing we have a family with autism in it is not even close to enough or scratches the surface. People see the blue, nod and move on. They don't "see" the effect it has on our son or our lives and therefore doesn't make lighting it up blue or whatever color effective. 

People need to start getting involved. Help a a family out. Remove roadblocks to care. Include our son in regular activities. Be aware that autism is a spectrum and affects kids differently. Be aware that all the kids have various ways they communicate. Send a mom an iTunes gift card and give their family the gift of a communication app if they don't have one and give a child a voice. Volunteer at your local day programs and hang out with these awesome adults. Lobby your local businesses to hire more staff with autism so they have a chance at more independence. Be involved. That's the only way this world will become more autism aware. Lighting it up blue does not help awareness, advocacy or acceptance. DOING something does.

These are our thoughts today. Our truth. Our life. We share it in the open, uncensored every single day so that people can see the realities of nonverbal autism with severe medical problems and then you can truly become aware and understand what would actually help and not just wondering what light it up blue does.