Jackpot

I've been reluctant to say so because it's only been 3 1/2 weeks since surgery, but Jacob is doing GREAT! The only seizure-like thing that I've noticed is some twitching of his right arm. In the past, it had always been accompanied by darting eye movements but I've been watching and haven't seen any. I am seeing all Jacob all of the time. Epilepsy surgery is a calculated risk and I feel like we hit the jackpot.

I remember in February when Jacob had a 6-hour video EEG and the results read "infantile spasms imminent". We were given the choice of another round of ACTH or Depakote. I asked what the most aggressive treatment was... ACTH. But Jacob's neurologist felt that we should try Depakote first and if after 3 weeks Jacob's EEG did not improve, then we would try ACTH again. Matt agreed. And so did I. And after 3 weeks, the EEG had improved and we never saw the spasms. But we did see other seizure types. And this is why we asked for a neurosurgical consult and began our hemi-journey.

Before surgery, Jacob already had right hemiparesis, a right visual field deficit, and delayed speech as a result of his stroke. He didn't have much to lose going into surgery except for seizures.

Regarding my last post - I hope that it did not read as if Matthew or Jacob are ever a burden to me. Time is my only burden.

Rambling

I am feeling overwhelmed, not for any particular reason. I have a lot of support for sure. Today was the first day that I brought Jacob to drop Matthew off at school and to pick him up. My mother and father and mother-in-law and brother-in-law have all been doing this for me since we came home from the hospital.

Jacob is improving every single day. When we first came home, he could barely stand on his own and walked only when I held both of his hands. Then he could walk holding one hand. Then he could walk on his own. He has difficulty transitioning from one position to another but still he pushed himself up from laying down to sitting today. In an older post I went through the painstaking process of Jacob climbing up stairs. So many different muscles have to fire in order to do the simplest of movements. And as I said before, Jacob wills his little body to do so.

Matthew has always been a priority but I am concerned about his perception of the things in his world including himself. So we signed him up for karate lessons and swimming lessons and threw him a fabulous Beach Bounce birthday party. I want him to be filled up inside. We often tell him how proud we are of him for being helpful or sharing, for being a big boy staying dry all night, for being a good big brother. I tell him that he's a good singer, that he has great ideas, that he can jump so high and run so fast.

But I find myself begging inside for these small people to go to bed or acting like a crazy person because Matthew is spitting everywhere or Jacob is refusing to eat his dinner. I am always hoping that I will overcome my own exhaustion and anxiety so I can do better the next time. Maybe I'm overwhelmed because I am just a regular person. I gossip. I speed. I watch reality TV. I get angry and upset. And if not for all of the support I have, I wouldn't even have the time to reflect.

Maybe I'm overwhelmed because our time in Boston has finally caught up with me - a delayed reaction now that everything is all better. Now that there is nothing to be afraid of or to worry about really.

I just can't put my finger on it.

The Last Week

Our last week-and-a-half together. Mommy has to go to work soon. After Jacob's post-op appointment next week, he will go to daycare. We went last week to have lunch with his class and it was as if he had never left. He has been making steady progress and has been willing to squat and to get on his knees and to sit down. He still needs help pulling up to stand and if he squats too low, he needs help getting back up. It seems counter-intuitive but I feel that he is just as or less likely to fall as he was before surgery because he knows his body is different now. He does not take risks, he is conservative, even tentative about his movements.

Work is good for me. And daycare is good for Jacob. But he is... lovely.

I ordered three of these union suits for Boston but they never worked out because of the IV's and because Jacob's tender body would not easily bend to get into the suit. But damn it he looks good in it now!

Post-Op

Two weeks post-op and Jacob has started rehab and will resume Early Intervention. He is able to stand and to walk with or without support, depending on how he is feeling. His muscles are angry with him so he is not able to pull up to stand or get to his knees or squat to sit. He is using his right arm and hand as an assist and we are considering Constraint Therapy III. He has not had a fever in a few days and I made a special trip to Boston to check his incision which was getting pink and puffy, but it is not infected. He has had two baths since we've been home and finally all of the glue from the EEG is off of his head and out of his hair. His hair is unruly and had I known they weren't going to shave his entire head, he would have had a haircut before surgery. Hopefully, his hairdresser will be brave enough... When I have the energy, I'll post all of the pictures from our vacation on the Neurosurgery page. One is there waiting already.

Resolved

"Hello Ms. Borgueta, Thank you for your inquiry. I apologize as it sounds like you may have been given mis-information regarding the physical therapy benefit... Please note: There is no stipulation in the policy that requires the physical therapy to be rendered at the same hospital the procedure was done at. I apologize for any confusion in this matter and will advise the supervisor of the representative that you spoke so that they are coached accordingly."

WTF

Upon the advice of Jacob's Nana, I sent the following correspondence to our health insurance provider. The alternative is a 20% copay per visit and I was told to expect a pretty big bill.

I called this morning to determine if my son Jacob was eligible for "physical therapy following admission" and learned that he was not because he would receive rehabilitation services from Hasbro Children's Hospital rather than Children's Hospital Boston where he underwent a left functional hemispherectomy on December 22, 2010. I would like a supervisor to please put in writing why rehabilitation services are not covered 100% simply because I am choosing a children's hospital closer to home. The services provided would be the same, as Jacob's prescription is for 3 hours per week over the course of a month. Hasbro Children's Hospital does not perform Epilepsy Surgery, otherwise we would have gone there. Again, please have a supervisor put an explanation in writing. Thank you.

Bethany Borgueta

Retrospective

A catastrophic form of epilepsy with an underlying cause. Brain malformation resulting from a left middle cerebral artery infarction. Two-thirds of the left hemisphere of the brain missing. I do not remember for how long I mourned.

As I studied Jacob's EEG in Boston, I was sad for the left hemisphere, still producing electrical discharges - pathetic electrical discharges - that had no resemblance to the powerful storm from which all of this began. An island of brain tissue allowed to live only to reduce blood loss during surgery.

Rehabilitation of body and annihilation of seizures... we hope. 2010 was a good year. Constraint Therapy, Early Intervention, Left Functional Hemispherectomy. 2011 is the year of recovery... for all of us.