Mis-match day @ school for Avery and Cora.
As soon as Avery and Cora got on the school bus, I loaded up Brock and was all set to go. So I thought........
Click, click, click. Are you kidding me? A dead battery?!?!?!!? By this time, Jason was on the scene and located the battery charger, hooked me up and I was ready to roll. But, not before Brock had to get a little seizure out of the way. :(
As I was driving to Peoria, I programmed my GPS to get my ETA. (too many acronyms?lol) I discovered that I should "only" be a few minutes late for my 9am appointment. Well, that was before I encountered the dreadful Route 9 construction with not only stoplights, but flaggers with stop signs, this morning. Grrrrrr!
Fully charged with some road rage, I arrived with Brock about 15 minutes late, and checked in. The gal at the desk said Brock was next in line to be called. But, wouldn't you know, we had to wait in the waiting room.....and wait.... A gal came out and called what I thought to be "Brock for Dr. A." I stood up, wheeled Brock and almost ran into a couple......one of which was named "Rick, for Dr. A" Oops! (So much for being next!) That gave me some time to sit back down and to ponder how bad my hearing must be failing me in my old age.......
Once we were finally called back, the nurse did all the pre-doc stuff, then we were left to wait some more in the exam room. Fun times.
Dr. A finally came in and went over Brock's x-ray. The right hip looked good! The left hip, however, is over 50% dislocated and requires surgery to rebuild the acetabulum. I was under the impression ALL that was done with the last osteotomy, but at that time, the left hip was "pretty good" and he did some work on the femoral head and placed some pins and plates in the femur, but didn't fully rebuild Brock's acetabulum (hip socket). --Apparently because the procedures were taking a long time, and the left didn't require extensive repair.
I argued that "simply" rebuilding the hip wasn't going to offer a long term solution, given Brock's high tone in his lower extremities. Dr. said he planned on releasing the adductors (this time on the left), but I asked if Brock would be a good candidate for a Baclofen pump.***(See bottom of posting) He thought yes. So I asked if it all could be done during the one procedure, as to not have 2 separate surgeries?? Dr. didn't see why not.
As of now, we are in a holding pattern so to speak. Ortho will contact Neurosurgery (for Baclofen pump placement) and coordinate a surgery time. I will be notified once there is something scheduled. All I know is that it will be done before the end of the calendar year.
My drive home from the appointment had me on the phone, virtually the entire time, in search of one of Brock's seizure medications. He is on the generic form of Trileptal, Oxcarbazepine. I noticed this morning he was getting low in his last bottle, so I called CVS for a refill. "Sorry, our generic is back ordered until at least December." Seriously? I ended up calling most of the pharmacies in a 60 mile radius and got the same answer each time: "Due to a production shortage, there is only brand name available."
No THANK YOU.
We did brand name a few years ago, until I found out I could get a 90 day supply of generic for $30 vs. $350 for name brand. That higher amount was not sitting well with me today.....especially after having to digest the surgery plan for Brock!
I ended up calling Neurology and leaving a message stating my prescription dilemma. I just received a phone call back from the nurse and was told I have an option of getting generic tablets that I can crush and hopefully make it work for Brock's g-tube. (We currently use tablets for his Topamax, so I am crossing my fingers that it works as well.) :)
I'll be updating the blog when I know more details on the surgery schedule.
Until next time.....
Here is a picture of our sugar maple with its beautiful fall color. This is the tree that we planted when we first moved into this house about 12 years ago. (In years past, I've been able to get triplet pics in front of this.....doesn't look like it this year.)
****Many have asked what a Baclofen pump really is and what it does. I have copied a brief explanation and will paste it below:
Cerebral Palsy Treatments:
Intrathecal baclofen therapy - (ITB) for spasticity
Content Provided by Scope
What is ITB?
Baclofen is a drug produced as a muscle relaxant. It has been used to relieve the stiffness caused by spasticity.
However, when it was taken orally it was found to have many side-effects, including lethargy and loss of balance. In June 1996, the US Food and Drug Administration approved a new system of delivering the drug to people with spastic cerebral palsy, called Intrathecal Baclofen Therapy (ITB). The system is also known as Continuous Intrathecal Baclofen Infusion (CIBI). Baclofen is delivered directly into the spinal fluid by a pump that is implanted under the skin of the abdomen in an operation that lasts about two hours. The pump is the size of an ice hockey puck, but can be easily ‘housed’ in the abdominal cavity. The pump then delivers a small amount of the Baclofen into the spinal fluid via a small tube. A computer turns on the pump and the dose of Baclofen can be adjusted upward or downward, depending on the individual’s response.
How does it work?
By putting the Baclofen directly into the spinal fluid, the drug can act as a muscle relaxant and reduce spasticity in the lower limbs without the side-effects associated with the oral administration of the drug.
The most common side-effects of the Baclofen when delivered by pump include loose muscles, drowsiness, nausea, headache and dizziness. However, these are usually temporary and manageable by adjusting the dose.
The pump itself needs to be refilled typically every two months and this is accomplished by inserting a needle through the skin into the pump. Some clinicians will use a local anaesthetic if necessary for this. The pump will need to be replaced after five or six years.
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