A MIRACLE!

Henna was 2 years old when she was admitted to the hospital with a traumatic brain injury. She had been thrown against a concrete wall by her biological father for crying too long. She had two depressed skull fractures, old blood on the brain from previous abuse, a lacerated liver, collapsed lung, suspected sexual abuse, and shaken baby syndrome. Henna coded while on the way to the hospital via helicopter and was brought back to life only to go into surgery to relieve pressure on her brain. She was not expected to live through the night. Henna was in a coma for one month hanging on to life. Then the miracle happened! Henna woke up and was able to move all her limbs and speak, shocking all of the medical professionals. We took Henna into our home and shortly after her arrival she started having seizures.

Henna's journey continues as we try to control her seizures. She received the Vagus Nerve Stimulator (VNS) on Feb. 4, 2011 at Children's Hospital in Washington, DC. The VNS will send an electrical impulse to Henna's brain every 3 minutes for 30 seconds to interrupt her seizures. Over two months we have increased the electrical current and we have seen no change in her seizure activity. It looks as though Henna is in the third of children who receive a VNS that sees no relief from the VNS. We are very disappointed! We have started her on a new medication in addition to her current medications. Maybe it will help.

On August 6th, 2012, Henna had a full corpus callosotomy. This surgery is for people who have generalized seizures with no focal point. The corpus callosum is a band of nerve fibers located deep in the brain that connects the two halves (hemispheres) of the brain. It helps the hemispheres share information, but it also contributes to the spread of seizure impulses from one side of the brain to the other. A corpus callosotomy is an operation that severs (cuts) the corpus callosum, interrupting the spread of seizures from hemisphere to hemisphere. Seizures generally do not completely stop after this procedure (they continue on the side of the brain in which they originate). However, the seizures usually become less severe, as they cannot spread to the opposite side of the brain.

Henna received a white Labradoodle, Leo, from 4 Paws for Ability in Oct. 2010. We sent 4 Paws 2 shirts a week to help train her dog. One shirt was when Henna had a seizure and they used it for her dog to smell the chemical change during her seizure. The other shirt was when Henna had NOT had a seizure. This helped her dog differentiate between the two scents. It's a fascinating process. We trained for 10 day in Ohio with Leo and a trainer before bringing Leo home.

Leo had been going to school with Henna but started to bark and growl at different people when they came into her classroom. We worked with Leo's barking and growling when people would knock on the door and for a while he seemed better. He is very protective at home also. He then barked and growled at some boys who came into Henna's classroom and had to be removed from school. The trainer at 4 Paws said that some dogs bond so closely with their child that they become protective. Leo took on Henna's classroom as another home and felt he had to protect her. Sadly, because of his aggressive behavior, Leo can no longer be a service dog. The trainer said Leo would behave lthat way with any child he bonded to. Just his nature. We will keep Leo as a pet. Leo LOVES being just a pet. He still alerts to Henna's seizures and lives to get his hot dog reward!

Henna now has Snoball, a beautiful Golden Retriever. Snoball was born June 3, 2011. She is so sweet and a bundle of energy! Sno is doing an excellent job alerting to Henna's seizures BEFORE she has them! She is alerting up to one hour before Henna has a seizure. Sno goes to school with Henna and proudly wears her school ID badge. Snoball will be a great seizure alert dog and will serve Henna well.

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Saturday, August 18, 2012

Home update

Henna has been home since Wed. and I have NOT seen a seizure!!!  Praise the Lord.  I really am walking around holding my breath waiting to see one.  She is still taking her normal medications each day.  I'm not watching her every second so she could be having some but as far as I can tell she hasn't.

The operation Henna had is known for helping drop seizures. Henna had many daily.  The operation can also help other types of seizures as well.  If this operation stops all of Henna's seizures it will truly be an answer to prayer.  We must wait and see what happens next.

The corpus callosotomy is most helpful for generalized tonic clonic or grand mal seizures and drop attacks. Seizures are not usually stopped entirely by this procedure; however, the effects of the seizure are usually less severe. Often patients may have seizures on only one side of the body instead of both sides, after surgery. 

What Is Corpus Callosotomy?
The corpus callosum is a body of specialized nerve tissue that connects the left and right hemispheres of the brain. Information passes back and forth through the corpus callosum, allowing both hemispheres of the brain to "talk" with each other. Though the corpus callosum helps coordinate brain function in both hemispheres, it can also transmit abnormal electrical activity that can lead to seizures involving the entire brain.
During a corpus callosotomy, no tissue or portion of the brain is removed — instead, the connection between the two hemispheres is either disrupted, in a partial corpus callosotomy, or totally severed, in a complete corpus callosotomy.

Henna had a complete corpus callosotomy.  Her seizures are generalized, without a focal point.

How Seizures Are Controlled by Corpus Callosotomy
While corpus callosotomy, unlike other types of epilepsy surgery, doesn't remove the actual origination point of the seizures, it can greatly reduce their frequency and severity. When the tissue that forms the corpus callosum is severed, the electrical activity that causes a seizure can no longer spread from one hemisphere to the other. Once seizure activity is confined to a hemisphere of the brain, seizures tend to occur less often and with diminished intensity.

Henna has been a little sassy and wants to resume her normal activities.  The doctor wants her to rest, nap, and take it easy for the next few weeks.  Funny!  :-)  Those of you who know Henna are smiling right now at the thought.

I cancelled Jill's House this weekend.  It was just to early for her to go.  She'll have respite there in Sept.  Carter has been here which has helped pass the time.  We have been doing craft projects, baking, and watching movies.

Henna's incision looks wonderful.  What skillful hands her surgeon has!  The incision is about 6" long and is very thin.  Her hair covers it so unless you look for it you can barely see it.  It's healing nicely.   I have to watch her because she's started to scratch it.  The doctor said that after 48 hours the incision site has actually sealed so she can't open it up.  The worst she could do is make it bleed.  Her doctor said there are layers of stitches.  Isn't the body an amazing thing?  I marvel at what our body can do and what we still don't know about it.  I DO know that while sitting in the hospital with Henna I added some pudge to my body.  Sigh...   It comes on so quickly and is so stubborn when I ask it to leave.  Ha!

Today is another down day.  Henna was up early "barking" orders.  I just checked on her and she has crawled back into bed.  Good for her!  Rest is good...

Have a restful weekend everyone!

Jan




Posted by Jan at 6:10 AM

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