Rhema’s record has been a brain surgery every 8 months; she has just broken that record and we are now at the 9 month mark!
“Hydrocephalus is almost always treated successfully with surgical placement of a shunt; but rarely does either treatment last a lifetime without complications. A critical aspect of managing hydrocephalus is being well informed and staying vigilant about potential life-threatening complications. Most problems associated with shunting occur weeks or even years after the surgery. When things are going well, it is easy to forget about hydrocephalus and having a shunt. In infants, signs include a full and tense fontanel (soft spot), bulging of the scalp veins and swelling or redness along the shunt tract. Also watch for symptoms like unusual vomiting, irritability, sleepiness and decreased interest in eating. When the child is older and the fontanel and other sutures between the skull bones are closed, you no longer have the same warning signs. Children and adults may experience headaches, vomiting, irritability and tiredness. Swelling along the shunt tract occurs less frequently. In the event of an abrupt malfunction, a child may develop symptoms very rapidly, in a matter of hours or days. Without treatment, coma, and even death, may result. Older children and young adults may also become increasingly tired, have difficulty waking up and staying awake, experience personality changes and, unless treated promptly, may go into a coma.” Hydro Angels Over America
Having a child with Hydrocephalus is much like playing “Jenga” (the game where blocks are stacked and the goal is to remove from the base of the tower without knocking the tower down); Rhema can wake up feeling fine, we can plan our day or the week, but at any time her shunt can get obstructed and begin to fail. Rhema gets very sick, very fast and we drop everything and race her to the hospital. It can happen anytime– day or night, rain or shine, 5 miles from her hospital/neurosurgeon or 5000 miles away from her hospital/neurosurgeon.
Life with a child who has Hydrocephalus is very unsettling and, if we are not vigilant in guarding our thought life, it can be mentally and emotionally crippling. Songs like “The Anchor Hold” and “On the Solid Rock I Stand” have had new meaning to me and I’ve learned the value of Jesus being THE GREAT “I AM” –He is the One constant to which I cling.
This month we are focusing on Rhema’s Journey with Hydrocephalus to provide insight into her world. We pray this helps educate concerning Hydrocephalus as well as gives weight to our request for a prayer when things are going badly with Rhema’s shunt. In addition, we pray it also drives home our prayer need, as her parents, for prayer for wisdom and discernment so we can catch those early warning signs of shunt obstruction/failure and know precisely what to do when Rhema is in an emergency situation. Prayer is needed then the most!
Blessings to you all, our dear family and friends who pray for our precious Rhema….