OLOL PICU, Long Houston trip update

After much anxiety, Braden was moved to sleep in his own bedroom at home, once we ran out of room near the bassinet for all his machines. Here is a pic of him his first night in his own crib, with all his crib critters cheering him on.

Not much of an update on our stay at OLOL. The sputum culture is growing something, and until we know what it is & what medicines will kill it, we will continue with a very general antibiotic. Braden had another fever spike and respiratory distress episode last night, which eventually got under control with ice packs, a cool rag on the head, and mostly, a dose of atavan to slow his respiratory rate down... he was in la la land not soon after. We continue to monitor his vitals closely, as his fever has shown it can quickly become a concern.

ABOUT OUR TRIP TO HOUSTON (LONG):

Let me begin this update by saying that we do not have medical degrees, and really have not had time to research our findings from our visit with the specialist, so some things may not be spelled right or completely explained in detail, as our knowledge at this point is still somewhat limited.

There are three indicators of our situation that will foretell our future. These indicators are all a sliding scale within themselves, but they all paint the overall picture. Those indicators are: Epilepsy (what kind of seizures we have, how long they last, age in which they began), Mental Retardation (IQ tests will determine how severe the brain damage is, but the first available opportunity to gage our outlook will be at about age five), and Cerebral Palsy (how delayed our motor skills will be).

Let’s talk about the EPILEPSY first, since that is the one thing we have definite answers on. There are two types of epilepsy (continuous seizures) – one is called symptomatic, and the other is cryptogenic. Typically, he explained that children with cryptogenic epilepsy, often have a better chance of developing closer to “normal”. Cryptogenic epilepsy is a kind that is inexplicable as to why the seizures began in the first place. Symptomatic seizures are the RESULT of (symptom of) a traumatic event to the brain that caused the loss of oxygen. This will mean we have a more difficult outlook on the sliding scale of expectations, but things can change with epilepsy as Braden grows. The damage to his brain, in my own metaphoric manner, is like a cobweb on the brain… kind of spread out, and not in one specific area, like an egg or a knot. This will limit our options in treatment.

There are FOUR ways to treat epilepsy. The first is medication. While there are over 25 medications to treat epilepsy, only about five are designed to treat infantile spasms. While I don’t know what all of them are, we do know that we have been on three of them: ACTH (which did not work for us and was contributing to our high blood pressure), topimax (which caused the kidney stones), and zonegran (which we are now on, and our dosage has been steadily increasing).

The second way to treat epilepsy is brain surgery. Currently, we are not a candidate for surgery, because there is not one specific and concentrated area of the brain that was damaged and is causing the seizures, like I said earlier, it is more like a spiderweb – kind of spread out and generalized. Because it cannot be pinpointed to once specific area or concentration of the brain, we are not a candidate for surgery right now. In the future, his epilepsy can change, and eventually concentrate into one area of the brain, and at that time we could be a candidate, but not for now.

The third way to treat epilepsy, is through a special diet, called a “ketogenic diet”. While we don’t know really anything about it, the doc gave us a book about it. He says that research indicates that when the diet is combined with medication, many types of epilepsy can be kept under control for very long periods of time. This type of diet would replace our current formula. We will only look at this option if when we return for more follow-up in two month’s time, the zonegran is not working, or at such time before that we find his seizures are getting much worse. To get on this diet, requires hospitalization to “kick-start” it, so it isn’t something that can just be quickly decided on and prescribed. Of course we will post more, once we have had a chance to study.

The fourth way to treat epilepsy is to implant a kind of pace-maker for the brain, called a Vagus Nerve Stimulator (VNS). It would be implanted under the left clavicle, and be strung up the neck to control some kind of synaptic response that triggers the seizures. The goal of this pace-maker would be to fire when a seizure-onset is detected, therefore preventing the seizure. I am very vague here, as this will be much further down the road for consideration, and don’t know enough to really say more than I have.

We did get some relieving news about our infantile spasms, as we were further educated by “THE GUY”… they cannot cause any further brain damage. Braden’s future has already been written regarding the damage done, and time will reveal what that is. The infantile spasms (called West Syndrome) unfortunately can also lead to the future development of Lennox-Gastaut syndrome, which is seizure “drop” disorder, causing the afflicted to drop to the floor when having an episode. While these patients will usually have to wear a protective helmet for some time, the combination of diet and medication can prevent these seizure attacks from happening, and can be controlled for a better quality of life, in most cases (I say that, because often we are falling into the opposite of “most cases” – so consider this a disclaimerJ)

Regarding the mental retardation and cerebral palsy… with more education, we learned that being diagnosed with cerebral palsy is simply a confirmation of “developmental delay”, in regards to motor skill development. We shared with you before that there is the possibility Braden may never talk or walk, but again, this is something time will tell more clearly. If he is able to learn to do these things, at what age he learns them, and how far behind he is to his peers will be more telling about the severity of our future. For instance, if he has not learned to walk by the time he is five, chances are, he probably will not learn to do so. Right now, TIME and Braden are the doctor to determine the future. As for the mental retardation outlook, again, this will be told with an IQ test, and markers along the way… at what ages he can talk, walk, hit milestones, draw circles, etc.

While there are still many unanswered questions, at least our “wait and see” is no longer infinite, and by about age five we will have a much better picture of what our future lives will entail. For now, we will be satisfied that we have tried to give him the very best of care by traveling to see such a guru in epilepsy and infantile spasms, and know that God has our plan written as well - we will have to find and pray for the patience to allow Him to teach us the lessons that Braden was sent here to share with all of us. Thanks for traveling this road with us, and allowing us to share our story and journey with you.

Love to all,

Mommy, Daddy, and Baby Bee