We have had long conversations, and short ones. Talked about kids, men, and injustices of life (most of which involve the cleaning up of poop). We have cheered for each others' children and worked together. She is my "Go-to" person when I need sound advice from an advocate's stand point. You all have seen her work here. You have seen my work on her site. You may know her well, or not at all. She is the phenomenally talented Gina St. Aubin of Special Happens.
Because her writing is second to none, I'm going to let her tell the story, and then go on from there. She is writing about her son, J. And it is ONLY with her permission that I am publishing this very sensitive, very raw, very real excerpt. Read on:
We’ve had a series of appointments in the last two weeks. PET Scan and MRI (both under anesthesia), NeuroPsych, 2 days of infusions, a LONG appointment meeting the Rehab doc, NeuroPsych again, one of two neurosurgeons and our epileptologist, and the then second neurosurgeon today. They have had what they call a “conference” and presented J, his EEGs, all testing etc to 20+ doctors, therapists, social workers and more tonight.
Honestly within the last 2 days, we have been hit with a couple of bombshells that have literally knocked us back and taken the basis of the genesis of all of J’s diagnosis and turned it upside down. We are taking some time to absorb it all, so if we don’t respond, please don’t think us unappreciative… we are just… overwhelmed to a new level with the enormity of decisions we have to make.
To make it simple (which it's not), here’s the gist:
It has been said, since J was 9 months old that he had an intrauterine stroke. It was explained to us by a neurologist that he could see that it was within the 1st trimester because of the development of J’s brain on the left side. It was explained that it was the left frontal lobe only.
The MRI shows that the ENTIRE left hemisphere of J’s brain is malformed. All of it. There is absolutely NO indication of an intrauterine stroke. It also did not happen at birth. It looks to be the true example of “sometimes these things happen”. And, quite honestly, a miracle that he's here...and functioning as well as he is.
The EEGs have been showing his seizure activity as focused / limited to one area. That’s not so either. It’s actually the entire left hemisphere that’s not only malformed but is also constantly seizing.
One significance of this, besides the misdiagnosis, is that *that* misdiagnosis has lead us and J down a wasteful road that NO medication...NO medication would have EVER touched the epilepsy because of the malformation. He would have had this subclinical epilepsy since a young age...likely since the age we starting asking doctors why he wasn’t sleeping… 1.5 - 2 years of age.
Since NO medication will have (or will ever) work because he has a malformation of the entire hemisphere, surgery would have been his only option - this whole time.
Herein, the surgery….the surgery is necessary to stop the left side from it’s constant seizure status. 100% of his days and nights are in subclinical seizures. Eventually, the one medication that’s holding them to a subclinical level will wear out … again because NO medication will stop it … and J will then be in a full blow constant outward (clinical) seizure. That - again - no medication can stop
All the activity that this left hemisphere is doing is also keeping the right side (presumably healthy) from functioning properly. The longer the left hemisphere is there being ‘busy’, the higher the chance the right hemisphere has of taking on the subclinical or clinical seizure activity. In other words, in order to keep the right side healthy, we have to stop the left side.
The brain surgery that we once thought was so serious has become even more serious. Where we thought we were having to take a sliver of an already unhealthy (but small) section of a hemisphere out…
We have to disconnect the entire left hemisphere from the right.
That means, a piece of his left hemisphere would be removed in order to reach the central connections (center) of his brain where they would disconnect the two halves. It’s called a Hemispherectomy.
He has been approved for this operation this evening. However, the conference doctors have requested that the entire team sit down with us one more time and really go over the pros and cons.
Obviously there are a number of side effects and possibilities. These are all being weighed out. In the end, the choice we are faced with is to watch him deteriorate slowly, eventually needing this brain surgery or a brain surgery that also involves removing a portion of the right side too… or give him a chance.
It’s late tonight. We’re exhausted. I’ll email the rest...but basically, we will be looking at 3 days to 1 week in ICU. 2-4 weeks of intensive rehab IN the hospital Monday - Saturday, then another 6-8 weeks of intensive rehab at home. He will be lethargic. He will be unable (and likely un-wanting) to swim, jump, run, play…).
We won’t have a date until after we speak with the team again, which is thought to be able to happen early next week.
Please rest assured that this decision is not light, but the heaviest, most difficult, "unfair" decision we can make. This has been reviewed heavily by the ONLY 6 pediatric epileptologists in our state, a number of neurologists, a neuroradiologist, all neuro-whatevers, therapists, 2 neurosurgeons... this is not a fast decision.
J is now 9 years old. And he will be undergoing major brain surgery very soon. This summer, in fact, though the exact date is unsure. It goes without saying that you will be reading a lot more about J in the weeks to come. Since this email (written 5/15) was sent, many have expressed a desire to help the St. Aubin family before, during, and after the surgery takes place.
This is something that will affect their entire family. And here's what I know. I know that the special needs community via blogs and social media is strong. I know that this community is a family just as much as any family is. And it's time for a family reunion. It's time to band together again. To show our strength, our support, our love and friendship. It is our time to shine. We've had a nice hiatus, now it's time to get back to work.
We have done this before. We have really made a difference. So there's no question about whether we have the means necessary to be successful. We all remember Deeds. We all fell in love with him and his family. This time, it's even more important. There are things that will become necessary while J is in the hospital. Things that will have to be taken care of that Gina and her husband will be unable to accomplish, because they are taking care of their child. That's where we come in.
Over the next week as plans take shape, I will post and ask for help. Other bloggers will post and ask for help. I will ask every blogger I know to consider posting about the St. Aubin family's story on their sites. I will ask their readers, my readers, and Gina's readers to leave messages of comfort and strength. I will ask for... everything. Because it. is. necessary. This family needs the support we have to offer. And I won't apologize for asking.
At Gina's request and mine... please keep them in your prayers. Whatever your religion, whatever your opinion, they need peace. They need comfort. If you have ideas, or questions about efforts to be made on behalf of the St.Aubins, please don't hesitate to toss me an email at firstname.lastname@example.org.
Images in this post from the Google