Sunday, September 30, 2012

From the Trenches

I write to you today from a dark cold place. The past week has caused me to reevaluate my whole life, and where it shall go. We are back in our home away from home at Children's of Alabama. James David had shunt revision #10 this week. Before this he was doing amazing. Making strides in his eating and social skills. (I've never seen the boy eat so much. I was so ecstatic!) Then, as it often does, everything changed seemingly over night. My happy go lucky and dare I say "normal" two year old turned a complete 180 degrees.
Wednesday, what we thought was a stomach virus turned into the most symptomatic shunt malfunction we've had so far. Surgery went well, but I could see the stress in his neurosurgeon's eyes really just not knowing what to do with the little boy he and his staff (my co-workers) have come to love. Nothing he tries seems to work, and its not his fault. James David's body just doesn't cooperate with his efforts.
Thursday, tiny man perked up and we went home! :)
Friday, 4 am brought more vomiting and lethargy... All morning was spent in the ER with tests run and doctors and nurses swarming. James David had them scared, and that made me terrified. All I could do was hold him. They finally got him stabilized and admitted. They still don't know whats wrong.
Saturday and Sunday, he has his good moments, but he won't take hardly anything PO (by mouth). He's fussy and he sleeps a lot, but he still manages to put a smile on everyone's face. I have finally given in to the fact that a g-tube will be best for him. We are hoping to get it placed tomorrow. Going from a full-time breastfeeding mom when all I could do was feed my son when he was born to having to rely on a machine to supply him with nutrition is one of the hardest decisions I've ever had to make. I grieve the thoughts of cooking dinner for me and my son or being able to treat him with snacks after school. No matter what I try to give him, he just looks at me and says "Mommy, no." and I don't understand this...
I'm worthless right now. I barely eat. I barely sleep. I just stare and cry (and creep on facebook). I've missed all my classes and have fallen way behind in my studies. I just cannot focus. I'm realizing now that Med School is impossible for me, no matter how badly I want it. I love the Brain and CNS so much! I'm so insanely passionate about it! Its amazing and complex and just miraculous. However, I cannot do medicine, and be James David's best mommy. It's not in the cards for me. I'm at my wit's end...

Tuesday, September 4, 2012

Hydro... what? That's something with water right?

September brings a lot of things. It brings fall with cool weather and changing leaves. Classes start back, and it brings college football. But you all don't need me to bring your attention to these things. You're living them with me. One thing you probably don't know is, September is Hydrocephalus Awareness Month. Please don't stop reading here. The love of my life was born with this. It effects our everyday lives, and it could yours one day too.

*DISCLAIMER: I am not a medical professional, nor do I pretend to be. This blog contains information in my own words to help educate my family and friends on my son's condition. For medical advice on hydrocephalus, please seek a neurosurgeon. For more information on hydrocephalus you can explore The Hydrocephalus Association.

What is hydrocephalus? " Hydrocephalus is an abnormal accumulation of fluid—cerebrospinal
fluid, or CSF—within cavities called ventricles inside the brain." Also know at "water head" or "water on the brain". It is commonly treated by the surgical placement of a shunt. (A medical device consisting of 3 parts: the ventricular catheter, a small tube inserted through the brain into one of the ventricles; the reservoir and valve, a hard, small piece placed under the skin on the outside of the skull where the valve regulates the drainage of CSF based on inter-cranial pressure and where neurosurgeons can "tap" the shunt to check the flow of CSF and test for infection; last is the drainage catheter (a peritoneal catheter in James David's case), the longer catheter that drains the CSF from the valve and redirects it to another part of the body where is is reabsorbed. However, shunts are not a "cure", but a mere treatment for hydrocephalus. Shunts can malfunction, and may possibly need to be revised. Another, newer treatment for hydrocephalus is an Endoscopic Third Ventriculostomy (ETV). This is where neurosurgeons place a hole into the bottom of the third ventricle to all CSF to communicate more freely between the ventricles. This as well is not a "cure" for hydrocephalus, and can also fail and need to be revised when the hole in the ventricle grows back together.

Our story: We were aware of James David's hydrocephalus (as his other medical conditions) before he was born. We were told there was almost a 100% chance he would need to be shunted after birth. The days following his birth his head circumference continued to grow...
At five days old our amazing, wonderful neurosurgeon made the decision to shunt James David. We were told of all the risks and benefits of a shunt, and that there was a chance it would one day have to be revised. Little did we know that just a week and 2 days later this would become our reality and send us down a road no one thought we would ever travel. To date we have had 8 more revisions totaling to 9 revisions. My kid is rare ;)  My precious son doesn't play by the rules. He writes his own book. Compared to other kids I've seen in shunt failure, James David barely shows symptoms. He is tricky.
James David's known shunt malfunction symptoms:
  • Insomnia
  • Fussiness
  • Anorexia
  • Swollen spinal closure
  • Head Banging
  • And sometimes, but not always, Swollen, Full fontanel.  
 Hydrocephalus effects our everyday lives. Every headache, tempertanturm, spit up, anything constitutes panic on my part. However, it does not slow my tiny man down. Other than slightly delaying his speech, my little man is showing no side effects of his condition. He is still the smart, funny, determined, little man he has always been. We hope to bring light to this condition. How common it is. How it effects those with it. And to help support research for a CURE.