Today we went to Duke for a visit with Pierce's neurosurgeon. He's seemed to be better since Monday afternoon and the general consensus (and hope) was that he did have a case of aseptic meningitis and that the steroids cleared it up. Together, we decided not to adjust his shunt valve just yet, since his symptoms have dissipated.
Would you continue to pray that Pierce would remain symptom free and that his headaches would not return?
Thank you for walking this journey with us!
5.22.2013
5.17.2013
Recovery woes
Well, it seems our little guys hasn't been relieved of all of his pain. His pain episodes continue to come. At this point, we've pretty much determined that his pain is a result of the surgery (pressure changes inside of his head).
He gets what seem to be, intense spinal headaches that come on after just minutes of sitting upright. They cause him to become inconsolable and to start vomiting.
So after several long days (and nights) of having to keep him lying flat, I called today to get in touch with his neurosurgeon. Fortunately, Pierce has an AMAZING surgeon who, even though on maternity leave, was willing to take a call at home from her nurse. She agreed that something should be done.
As of now, she thinks his headaches are being caused by one of two things (possibly a combination of both):
1) Aseptic meningitis. This is not the same as bacterial or viral meningitis as it is not caused by an infection. Aseptic meningitis is an inflammatory process that can occur after Chiari decompressions or similar type surgeries. The treatment for this is a 3 day round of high powered steroids (let's hear it for 'roid rage!).
2) Overdrainage of his VP shunt. Pierce seems to have classic overdrainage symptoms- fine while laying down, worse when upright. The good news is that treatment for this involves adjusting the pressure of his VP shunt, which is easily done by a magnetic device placed over the shunt. No surgery or invasive procedures needed. His last CT scan shows that his ventricles are quite small and this also would point to shunt overdrainage.
At this point, we have started the Decadron steroids to treat aseptic meningitis, and we are planning to return to Duke next week to see his neurosurgeon to have his shunt adjusted.
Pierce hasn't left the bed in 2 days :( Fortunately, Elmo and Veggietales seem to keep him happy, but we will be glad when he's back to himself and able to sit up and play.
Needless to say, we would really appreciate your prayers as we try to fix the source of his spinal headaches. Please pray that he would respond well to the steroid treatment and/or the shunt adjustment. And pray that these symptoms would subside quickly so that Pierce can find relief.
He gets what seem to be, intense spinal headaches that come on after just minutes of sitting upright. They cause him to become inconsolable and to start vomiting.
So after several long days (and nights) of having to keep him lying flat, I called today to get in touch with his neurosurgeon. Fortunately, Pierce has an AMAZING surgeon who, even though on maternity leave, was willing to take a call at home from her nurse. She agreed that something should be done.
As of now, she thinks his headaches are being caused by one of two things (possibly a combination of both):
1) Aseptic meningitis. This is not the same as bacterial or viral meningitis as it is not caused by an infection. Aseptic meningitis is an inflammatory process that can occur after Chiari decompressions or similar type surgeries. The treatment for this is a 3 day round of high powered steroids (let's hear it for 'roid rage!).
2) Overdrainage of his VP shunt. Pierce seems to have classic overdrainage symptoms- fine while laying down, worse when upright. The good news is that treatment for this involves adjusting the pressure of his VP shunt, which is easily done by a magnetic device placed over the shunt. No surgery or invasive procedures needed. His last CT scan shows that his ventricles are quite small and this also would point to shunt overdrainage.
At this point, we have started the Decadron steroids to treat aseptic meningitis, and we are planning to return to Duke next week to see his neurosurgeon to have his shunt adjusted.
Pierce hasn't left the bed in 2 days :( Fortunately, Elmo and Veggietales seem to keep him happy, but we will be glad when he's back to himself and able to sit up and play.
Needless to say, we would really appreciate your prayers as we try to fix the source of his spinal headaches. Please pray that he would respond well to the steroid treatment and/or the shunt adjustment. And pray that these symptoms would subside quickly so that Pierce can find relief.
5.13.2013
Post-Op 3 Weeks
Tomorrow it will be 3 weeks since Pierce had his suboccipital craniotomy cyst fenestration (whew! I've said that phrase one too many times this week).
For those who've followed us on facebook or twitter, you know that we had a little bump last week. On Wednesday night, Pierce woke up around 10pm screaming in pain. He was inconsolable. Nothing seemed to calm him down.
We were hoping it was something simple like an ear infection or a sore throat, but a trip to the pediatrician didn't yield any answers. Because of the high risk of infection and shunt failure during this post-operative period, the pediatrician felt we should take him in if his condition worsened. At the appointment, he had been able to calm himself down and it seemed the pain medicine was working well.
But as we returned home, his pain spiked again and he was unable to eat, sleep or do anything more than just scream in pain. For those who know what this boy has been through (ex: multiple spinal taps without pain meds-- hello!), you'll know that it takes something serious to make him cry like this. In fact, we've never seen him in this much pain. Even after the surgery, his pain was more manageable.
Because we are 2.5 hrs from our neurosurgeons at Duke, we decided to pack him up and make the drive. We were admitted through the ER. Pierce began vomiting when we arrived and the ER doc felt for sure that his shunt was malfunctioning. Hours later, Pierce had had numerous tests run, including a CT, x-ray shunt series and abdominal ultrasound. Unfortunately everything looked clear and there were no answers as to why Pierce was in such intense pain.
We were moved to the pediatric floor and the team was able to get Pierce's pain under control with the strong IV pain meds. Still, when it would wear off, he would instantly begin screaming in pain.
We really didn't know what else to do other than to pray and ask God to remove this intense pain from our son. It really was nothing short of miraculous what happened next. Pierce seemed to really turn a corner and began feeling much better. We decided, along with the pediatrician on call that since his shunt looked ok, we would return home and be admitted through our local children's hospital if his pain spiked again.
So we packed up and headed home around 5 pm. 10 minutes down the road and Pierce was sound asleep. When we arrived home 3 hrs later, we felt for sure he'd want to wake up and eat. But all he wanted to do was sleep. So we put him down for the night. Wouldn't you know the boy slept for 16 hours straight! No waking for pain meds, no crying. It was miraculous.
Since Saturday, Pierce has been his happy self. He still gets very tired quickly, but his fussiness is gone. We've since learned that the type of surgery he had can cause chronic, intense headaches. Adults report they come on suddenly and cause intense pain. We feel almost certain that his pain was related to the surgery. Would you please join us in praying that it never returns? We are hoping to make it until our appt in mid-June before we see another doctor or hospital room :)
Thank you all for continuing to follow our story and for praying for Pierce. We feel certain that the many prayers were heard and that the Lord healed our boy that night.
For those who've followed us on facebook or twitter, you know that we had a little bump last week. On Wednesday night, Pierce woke up around 10pm screaming in pain. He was inconsolable. Nothing seemed to calm him down.
We were hoping it was something simple like an ear infection or a sore throat, but a trip to the pediatrician didn't yield any answers. Because of the high risk of infection and shunt failure during this post-operative period, the pediatrician felt we should take him in if his condition worsened. At the appointment, he had been able to calm himself down and it seemed the pain medicine was working well.
But as we returned home, his pain spiked again and he was unable to eat, sleep or do anything more than just scream in pain. For those who know what this boy has been through (ex: multiple spinal taps without pain meds-- hello!), you'll know that it takes something serious to make him cry like this. In fact, we've never seen him in this much pain. Even after the surgery, his pain was more manageable.
Because we are 2.5 hrs from our neurosurgeons at Duke, we decided to pack him up and make the drive. We were admitted through the ER. Pierce began vomiting when we arrived and the ER doc felt for sure that his shunt was malfunctioning. Hours later, Pierce had had numerous tests run, including a CT, x-ray shunt series and abdominal ultrasound. Unfortunately everything looked clear and there were no answers as to why Pierce was in such intense pain.
We were moved to the pediatric floor and the team was able to get Pierce's pain under control with the strong IV pain meds. Still, when it would wear off, he would instantly begin screaming in pain.
We really didn't know what else to do other than to pray and ask God to remove this intense pain from our son. It really was nothing short of miraculous what happened next. Pierce seemed to really turn a corner and began feeling much better. We decided, along with the pediatrician on call that since his shunt looked ok, we would return home and be admitted through our local children's hospital if his pain spiked again.
So we packed up and headed home around 5 pm. 10 minutes down the road and Pierce was sound asleep. When we arrived home 3 hrs later, we felt for sure he'd want to wake up and eat. But all he wanted to do was sleep. So we put him down for the night. Wouldn't you know the boy slept for 16 hours straight! No waking for pain meds, no crying. It was miraculous.
Since Saturday, Pierce has been his happy self. He still gets very tired quickly, but his fussiness is gone. We've since learned that the type of surgery he had can cause chronic, intense headaches. Adults report they come on suddenly and cause intense pain. We feel almost certain that his pain was related to the surgery. Would you please join us in praying that it never returns? We are hoping to make it until our appt in mid-June before we see another doctor or hospital room :)
Thank you all for continuing to follow our story and for praying for Pierce. We feel certain that the many prayers were heard and that the Lord healed our boy that night.
Subscribe to:
Posts (Atom)
.JPG)
