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.

1-1-11

Whoa! It's New Year's Eve already? I was in labor at this time 4 years ago...

When Jacob was born, I knew my baby Matthew was becoming a little boy. Matt and I swear that he grew in the few days that we were in the Birthing Center. His butt was enormous compared to our new baby Jacob's. Matthew is my first-born, my New Year's Day gift. We rolled on the carpet together, crawled all over the place, played with every toy that was ever made. I sang him to sleep, danced with him until he leaned towards his crib, kissed him all over. I love this little boy.

Home Sweet Home

We were discharged at 5:30 pm yesterday. We felt that there was no reason to keep him there overnight just to have IV fluids. We weren't planning to let him dehydrate and to kill him. He was able to take a few steps at the hospital while I was holding his hand but sure enough after we were home he didn't want anybody to help him. But he needs help. His muscles are very weak. He's only been walking since February so we remember what it was like to guard him closely and pick him up all the time. He can sit up on his own so the challenge will be to make sure that he is happy and stimulated and to push him without overdoing it. He will be able to start rehab next week. He will continue to take his anti-seizure medication until his neurologist thinks it's time to wean and then I will be asking for another EEG to be sure.

The EEG patterns were non-epileptic. Jacob likely will go home tomorrow. And they lived happily ever after.

903B Northeast

The IV went back in yesterday afternoon and Jacob is scheduled for an EEG today. He has been running a fever off and on so they took blood for a culture and so far no infection. He is eating and drinking but not enough. He is still sleeping most of the time. The EEG is to see if Jacob has been having seizures since the surgery and to decide if he needs to be on a different medication. My theory is that he has phantom brain like a phantom limb after amputation. His right hemisphere has over-compensated for the left and now that it is gone, maybe the right is behaving as if the left was still there. Just a theory. At least we will have some answers before we leave the hospital instead of going home and being in constant paranoia over seizures. I would rather have watched Jacob's surgery, scalp, skull, brains and all, than see him having a seizure.

December 28th

A slice of toast with butter, an ounce of apple juice, and a sip of water and milk. We are recording everything Jacob eats and drinks. They monitor intake by our records and output by weighing Jacob's dirty diapers. When he meets their guidelines, he will be able to go home. He had physical therapy yesterday, really just playing with toys to see how far he is from his baseline before surgery. They have decided that he will need outpatient rehab when we go home which is what I expected. It's better than inpatient rehab. Jacob has moved his right limbs but he seems to be ignoring his right arm again and lets it hang limp at his side. But he can move it especially when he is agitated and wants to push the therapist or nurses away. He started closing his eyes and pretending that he was sleeping when they come around. He is still very weak all over. Very unsteady although he tries to sit up on his own. Once he is home we will spend a lot of time playing on "the big bed". I bought us a king size bed for Christmas because Jacob is still sleeping with us and Matthew sometimes wants to join in. Now we all fit together. I had to cram myself into Jacob's crib last night to help him sleep. It was actually more comfortable than the pull-out chair believe it or not. We also have a roommate now. Very strange to share a hospital room but last night went okay. Just another experience.