Rebuilding your dreams after your child’s brain injury

My grandson choked on a grape at 1 ½ years old at his San Jose daycare facility.  He was without oxygen for up to 20 minutes – so you can imagine all that is encompassed within that short statement.

When your world is turned upside down, it takes some time to cope with what’s happened, what’s changed in your life and the life of your child. If your child survives, you wake up thinking about the new day, and you go to bed wondering about your family and child’s future life.

Because we are all different in expectations and lifestyles, we handle a crisis differently. No matter the outcome, something will change after a choking incident – our brain cells start to die and change within 4 minutes of oxygen deprivation.

Some parents need to be alone to process what has happened.  Some parents need to be with others, to talk, and to be consoled with prayer and/or hopeful stories. There are professionals, social workers, and support groups to talk to and network with when you’re ready to reach out.

There will be a grieving – no way around that. Grief is a natural part of this process of loss and change in our life. If you believe in prayer and meditation, it can help you through this difficult transition.

There will be hard days ahead.  There will be difficult decisions to make. There will be changes that have to happen in everyone’s best interests. Trust your instincts, and get professional help if needed.

If your child has survived, believing in yourself and your child’s will to live will be good medicine. Never lose hope – things change daily in our world, and there is always the possibility for a brighter outcome, no matter how small.

Having been down this road almost eight years ago, we have learned to celebrate the small, and sometimes minute, improvements that we observe. The first sound of laughter after the incident, coma, and first few months of “rebirth” still rings in our ears and memories. Not to be forgotten, and always to be grateful.

Never say never, and don’t give up hope for brighter days for you, your child, and your family.

Peace, love, and healing.

Day 2 with brain monitoring, in coma.
Day 2 with brain monitoring, in coma.

You have to start somewhere …

When Judea was in the hospital post choking incident, and in a coma, and we didn’t know if he would wake up or not – we didn’t know if he would live or not – I started a Myspace page for him.  I might have waited til he woke up from his coma, I can’t really remember.  But I thought it would be a good way to keep family and friends updated on his daily and moment by moment progress, rather than individual phone calls and texts and emails.

After several months, I went back into the page and printed out some of them for my mother; mom did not have a computer, did not have Internet access, and desperately waited for information in her home in New Orleans while we were all in Northern California.  Mom had not yet met her great grandson Judea.  That meeting came during a trip in 2010, a year before she passed on. It was momentous for all in the family, and she fell in love with Judea immediately.

So the print outs were to send to my mom who could maybe share them with other family members who also did not have Internet or computer access.  All of this to say, I will go back into the memory vault of Myspace to share some of the eventful days and nights that have occurred during Judea’s first 5 years, post choking incident.

I use the word incident instead of accident, intentionally.  Incident is what it was in my mind – the serious and almost fatal outcome could perhaps have been averted if someone had immediately started CPR, calling 9 1 1 , rather than doing a finger swipe into Judea’s mouth.  Not a good idea to do a finger swipe, parents and grandparents.  More on this in another post.

Judea and school

Judea is in 4th grade in a special needs small classroom.  There is a program of education that is supposed to be on schedule for him, however he is unable to express his learning capabilities.  So teaching formats are limited to suit his capabilities.  He can watch TV, however if the screen is too small and there are kids in front of him, he can’t see the small screen from any distance. His vision from his cortical blindness has severely affected his vision.

He gets a speech therapy session for one hour each week, or maybe 50 minutes each week.  He has started adding a couple of new sounds to his speech pattern. Judea is unable to push buttons or acknowledge what he is learning, unless you can learn to read his body and facial language.  We know he can see something, not sure what or how much.  We know he can hear, because he is very sensitive to loud and sharp sounds.  He also acknowledges his favorite music and TV programs and movies.

I like to tell him he’s a big boy cause he’s in 4th grade now.  That does mean something when people hear it, because it reflects his age moreso than his capabilities to learn. Unfortunately we’ve been told he has to be bussed to school next year for 5th grade – bussed at least 30 minutes each way, which means his nurse will have to ride on the bus with him to and from school. Up to this point, dad has been able to walk him to school in morning and walk him home in afternoon.

Having to bus is going to add a negative layer to difficulty to get him ready in the morning, and to trust that he’ll be Okay on the bus to and from school. Stress, anxiety.

Almost 7 years ago …

On July 7, 2015, it will be 7 years since my grandson choked on a grape while at his daycare.  That changed the lives of Judea and everyone around him forever. Hard to believe that 7 years have gone by, even as I think about all of the changes and hospitalizations and surgeries that have taken place in that time.

I decided to start this blog to help other parents and/or grandparents (or other family members) learn something about: faith, fear, loss, grief, hope, experience, strength, and so much more. Our road has not been straight – we have had to maneuver unexpected curves in the road. I have been a backup caregiver for my grandson since the day of his incident.

As I write this today, Judea is 8-1/2 years old.  He has been in Children’s Hospital since last Tuesday when he had to undergo surgery on his right hip and thigh bone. I expected him home today, but haven’t heard from dad yet about the current status and plans to be released and come home. Surgeries in a complex care, medically fragile child never go quite as planned, and surprises can be expected.

Right now from what I’ve been told, the medical teams are trying to stabilize Judea’s insulin levels (he developed Type 1 diabetes several years ago); they are trying to stabilize his ability to accept his feeds through his G-tube (he developed Cyclic Vomiting within the past year). And I think the team is still working to best adjust the half body cast which extends from his waist down under his feet, with a bar in between the legs to keep them separated and the hip bone in its new placement.

Dad told me the cast adds about 40 pounds to Judea’s weight, and he is now about 60 pounds and about 4′ tall.  This also means we have to factor in how to get Judea home comfortably, how to get him around in our one-bedroom apartment, how to keep him entertained for 6 weeks of recovery in cast, how to keep his cast clean from bodily excretions, and how to work with Judea’s body to position him such that if/when he throws up, he won’t aspirate.

So, as you can tell just from this brief initial post, there’s lots to write about on each of these medical issues which have resulted from swallowing one little grape. I plan to write about all of this in hopes that the information will help prepare you, and will help give you hope for the brighter days ahead if your child has survived an incident with severe permanent brain injury.

Please check back regularly – I’ll be here, and I will at some point try to answer questions you may have and provide resources if you are just starting down this road of recovery with your child who has survived irreversible brain trauma.

Peace and Love.