What's next for Kyle?
- Opthalmology consult on June 30th
- 2nd post-op MRI and neurosurgery appointment on July 8th
- EEG on July 25th
- Neurology follow up in early August
Please pray:
- that the extra fluid that now surrounds Kyle's brain is absorbed into his bloodstream and that he won't need an additional surgery to drain the fluid.
- that his eyes show no congenital deformalities
- that the fenestration surgery continues to be a success and that Kyle won't need a permanent shunt.
- that his EEG shows no abnormal brain activity.
Thank you!!
Sunday, June 22, 2014
Saturday, June 21, 2014
Surgery.
One Tuesday in late May, we took Kyle for his fourth MRI and neurosurgery appointment. We were hoping for another quick check with no signs of increased intracranial pressure and no cyst growth. Fred, the cyst, had other ideas. This is what we saw when the surgeon pulled up the MRI images...
The large white area is all Fred. The smaller white areas on either side of the cyst are Kyle's brain ventricles. The surgeon said it was time to intervene surgically and an endoscopic cyst fenestration and third ventriculostomy (ETV) was scheduled for that Friday. The surgeon warned us that the surgery might fail and another surgery would then have to be done to place a shunt that would drain the fluid from the cyst down a tube and into his abdomen. We prayed and felt very strongly that God wanted us to try the endoscopic surgery, which was a much better option for Kyle long term and would eliminate the risk of future surgery for shunt revisions, infections and malfunctions down the road.
The surgery took about 2 hours to complete and went perfectly for Kyle. He had no complications from anesthesia and was alert when we saw him in recovery. We were expecting a minimum of 3 nights in the hospital but he did so well that he was discharged 24 hours after surgery to recover at home! However, they were not able to connect the cyst as they wanted to the ventricular system but were able to successfully poke holes throughout the cyst wall and create an opening on the floor of the third ventricle to allow fluid to circulate easier throughout the brain. The surgeon did not believe that the surgery was going to be successful and advised us that he thought the cyst would look the same on the first post-op MRI. Instead, this is what Fred looked like post surgery....
Not only was the cyst considerably smaller, but his brain had expanded to fill in the extra space. In the words of our surgeon, it was "phenomenal"! The main issue now is that the fluid from the cyst has accumulated in the subdural space around Kyle's brain. We are hopeful that this fluid will be absorbed into his bloodstream and that he will not need another surgery to drain it!
The large white area is all Fred. The smaller white areas on either side of the cyst are Kyle's brain ventricles. The surgeon said it was time to intervene surgically and an endoscopic cyst fenestration and third ventriculostomy (ETV) was scheduled for that Friday. The surgeon warned us that the surgery might fail and another surgery would then have to be done to place a shunt that would drain the fluid from the cyst down a tube and into his abdomen. We prayed and felt very strongly that God wanted us to try the endoscopic surgery, which was a much better option for Kyle long term and would eliminate the risk of future surgery for shunt revisions, infections and malfunctions down the road.
The surgery took about 2 hours to complete and went perfectly for Kyle. He had no complications from anesthesia and was alert when we saw him in recovery. We were expecting a minimum of 3 nights in the hospital but he did so well that he was discharged 24 hours after surgery to recover at home! However, they were not able to connect the cyst as they wanted to the ventricular system but were able to successfully poke holes throughout the cyst wall and create an opening on the floor of the third ventricle to allow fluid to circulate easier throughout the brain. The surgeon did not believe that the surgery was going to be successful and advised us that he thought the cyst would look the same on the first post-op MRI. Instead, this is what Fred looked like post surgery....
Not only was the cyst considerably smaller, but his brain had expanded to fill in the extra space. In the words of our surgeon, it was "phenomenal"! The main issue now is that the fluid from the cyst has accumulated in the subdural space around Kyle's brain. We are hopeful that this fluid will be absorbed into his bloodstream and that he will not need another surgery to drain it!
Thursday, June 19, 2014
Neurology Consult #1.
Kyle's first neurology consult came at about three weeks of age. He had a full neuro exam. His reflexes were normal and he had good muscle tone. There was some concern about his eyesight and it was noticed that his ears were slightly rotated back. There was also some concern over the movement on his right side and it was suggested that he might need physical therapy on that side. We left the appointment with an ophthalmology referral, an order for a EEG and a lab request for genetic testing.
About a week following the appointment, Kyle began to open his right hand and now uses it purposely when playing on his play mat. He receives physical therapy bi-weekly through ECI and is doing very well. His EEG is scheduled for late July and his ophthalmology consult is in late June. He is going to do great!
About a week following the appointment, Kyle began to open his right hand and now uses it purposely when playing on his play mat. He receives physical therapy bi-weekly through ECI and is doing very well. His EEG is scheduled for late July and his ophthalmology consult is in late June. He is going to do great!
Fred.
Kyle had his first neurosurgery consult at one week old. We decided right away that the surgeon was our favorite doctor among his medical team. He was to the point but also compassionate and hopeful about Kyle's long term prognosis. We were told to expect many appointments at the surgery clinic and regular quick brain MRIs to monitor cyst size and to ensure there were no signs of raised intracranial pressure. He showed us how to check the soft spot for firmness and the skull sutures for separation and told us to call him right away with any symptoms of ICP, such as vomiting or excessive sleepiness.
One of the concerns early on in Kyle's prenatal diagnosis was the type of cyst he had. It was thought that he had a very rare type of cyst. When we expressed our concern to the surgeon, he said, "Let's just call it Fred.". It didn't matter and treatment was the same regardless. We've been referring to it as "Fred" since.
One of the concerns early on in Kyle's prenatal diagnosis was the type of cyst he had. It was thought that he had a very rare type of cyst. When we expressed our concern to the surgeon, he said, "Let's just call it Fred.". It didn't matter and treatment was the same regardless. We've been referring to it as "Fred" since.
Wednesday, June 18, 2014
Birth Day.
It was decided by the doctors at the fetal center that we would deliver via c-section sometime between 38 and 39 weeks gestation. No one knew what condition the baby would be in at delivery and whether he would need immediate surgery to relieve the pressure on his brain. A medical team was formed and we were given a tour of the level 4 NICU, where our baby would be taken right after delivery and potentially stay for the first few weeks of life.
At 36 weeks, I noticed a decrease in fetal movements. It was a Friday afternoon and so we were sent to labor and delivery for evaluation. It was then discovered that I had developed pre-eclampsia and I was admitted for the weekend. Labor was induced that Monday, and due to the early delivery, we were able to try a trial of labor with the hopes of avoiding a c-section.
At 6:45 on Tuesday evening, our little boy was born. The room was full of people and medical equipment, none of which he needed. He scored a 7 on the apgar scale and then a 9 five minutes later. He was taken to the NICU under neuro watch and was assessed by the neurosurgeon, who saw no immediate need for surgery. He had an MRI the following day that confirmed the findings from the fetal MRI but confirmed that he did not have raised intracranial pressure . He was discharged home 48 hours after delivery with a follow up appointment scheduled the following week with the neurosurgeon.
We were so thankful! Not only did he not need immediate surgery, he also didn't have to endure a difficult delivery and his head size was within the normal range. We were elated to be bringing him home so soon.
At 36 weeks, I noticed a decrease in fetal movements. It was a Friday afternoon and so we were sent to labor and delivery for evaluation. It was then discovered that I had developed pre-eclampsia and I was admitted for the weekend. Labor was induced that Monday, and due to the early delivery, we were able to try a trial of labor with the hopes of avoiding a c-section.
At 6:45 on Tuesday evening, our little boy was born. The room was full of people and medical equipment, none of which he needed. He scored a 7 on the apgar scale and then a 9 five minutes later. He was taken to the NICU under neuro watch and was assessed by the neurosurgeon, who saw no immediate need for surgery. He had an MRI the following day that confirmed the findings from the fetal MRI but confirmed that he did not have raised intracranial pressure . He was discharged home 48 hours after delivery with a follow up appointment scheduled the following week with the neurosurgeon.
We were so thankful! Not only did he not need immediate surgery, he also didn't have to endure a difficult delivery and his head size was within the normal range. We were elated to be bringing him home so soon.
Prenatal Diagnosis.
It was late August of last year when we received the news. We were preparing for the upcoming school year. Our six year old would be entering the first grade and his four year old little brother would be going into pre-k 4. We were done having children and I was sad about my youngest entering kindergarten the following year. Then we received unexpected news- I was newly pregnant! We were shocked but ecstatic!
The first six months were relatively uneventful. We found out at 17 weeks that we were expecting another boy and he had a completely normal fetal anatomy ultrasound. We were thrilled! Aside from a minor rise in maternal blood pressure, everything looked great when I went in for the 28 week growth scan. Everything seemed fine during the scan and the tech did not seem alarmed. She verified that I was seeing the doctor afterwards, printed out a picture for my husband and sent me back to the waiting area to wait on the doctor. I was completely unprepared for what happened next.
I was called back a few minutes later for what I thought would be a routine appointment. My blood pressure check had been normal and I was relieved that the pre-eclampsia that had complicated my first two pregnancies wasn't going to rear its ugly head anytime soon. Then the doctor came in and said simply and suddenly, "The fluid filled spaces in the baby's brain are enlarged. You need a better scan and high risk consult". He patted me on the back and said not to worry yet and that it might turn out to be nothing. That was a Monday and my appointment with the high risk doctor was scheduled for that Thursday.
The days crawled by and I googled "enlarged fetal brain ventricles" over and over again. I discovered that it was often a benign condition that self resolved prior to delivery and felt nervous but confident going into our appointment. Little did I know, the enlarged ventricles were the least of our problems.
My husband and I waited two hours to be seen by the maternal fetal medicine specialist. She came in halfway through the sonogram and gave us the news- there was a large fluid filled mass in our baby's brain and we were being referred to a fetal center at the Texas Medical Center for a fetal MRI and further evaluation. She was not comfortable managing our care and would not be seeing us again.
We were seen the following week at the fetal center by another MFM specialist and had another level two sonogram. This doctor was confident it was a simple arachnoid cyst in the space above the brain and the baby's prognosis was very good. The fetal MRI was to confirm these findings. Instead it painted a very different picture. The baby had a large interhemispheric cyst located in the right frontal lobe that extended towards the back of the brain that was causing mass effect on the surrounding tissue. Additionally, he had complete agenesis of the corpus callosum- the fibers that connect the right and left brain had failed to develop and were completely missing- and also an area of polymicrogyria on the right frontal lobe, meaning the grooves in that area of his brain had failed to develop properly. It was suggested that we might want to consider a late termination and we were devastated.
We would then go through weeks of repeat sonograms and consults. We saw a neurologist who told us that our child would be at high risk for a severe to profound intellectual disability, seizures and cerebral palsy. That there were milestones our child would possibly never hit and it was possible he'd never be able to care for himself. Then we saw a surgeon who told us that there was "a lot of room for hope" and that occasionally he saw kids with such abnormalities that were only slightly impaired or not impaired at all. We were told by the doctors at the fetal center that due to the rapid acceleration in fetal head size, I would need a cesarean delivery and that they were concerned about "maternal tissue damage". We dug our heels in and braced ourselves for a difficult delivery and lengthy NICU stay.
But mostly, we cried, prayed and leaned on our family for support. Our church family prayed and fasted with us. By the strength of Christ, we made it through those weeks with our faith and hope still intact.
The first six months were relatively uneventful. We found out at 17 weeks that we were expecting another boy and he had a completely normal fetal anatomy ultrasound. We were thrilled! Aside from a minor rise in maternal blood pressure, everything looked great when I went in for the 28 week growth scan. Everything seemed fine during the scan and the tech did not seem alarmed. She verified that I was seeing the doctor afterwards, printed out a picture for my husband and sent me back to the waiting area to wait on the doctor. I was completely unprepared for what happened next.
I was called back a few minutes later for what I thought would be a routine appointment. My blood pressure check had been normal and I was relieved that the pre-eclampsia that had complicated my first two pregnancies wasn't going to rear its ugly head anytime soon. Then the doctor came in and said simply and suddenly, "The fluid filled spaces in the baby's brain are enlarged. You need a better scan and high risk consult". He patted me on the back and said not to worry yet and that it might turn out to be nothing. That was a Monday and my appointment with the high risk doctor was scheduled for that Thursday.
The days crawled by and I googled "enlarged fetal brain ventricles" over and over again. I discovered that it was often a benign condition that self resolved prior to delivery and felt nervous but confident going into our appointment. Little did I know, the enlarged ventricles were the least of our problems.
My husband and I waited two hours to be seen by the maternal fetal medicine specialist. She came in halfway through the sonogram and gave us the news- there was a large fluid filled mass in our baby's brain and we were being referred to a fetal center at the Texas Medical Center for a fetal MRI and further evaluation. She was not comfortable managing our care and would not be seeing us again.
We were seen the following week at the fetal center by another MFM specialist and had another level two sonogram. This doctor was confident it was a simple arachnoid cyst in the space above the brain and the baby's prognosis was very good. The fetal MRI was to confirm these findings. Instead it painted a very different picture. The baby had a large interhemispheric cyst located in the right frontal lobe that extended towards the back of the brain that was causing mass effect on the surrounding tissue. Additionally, he had complete agenesis of the corpus callosum- the fibers that connect the right and left brain had failed to develop and were completely missing- and also an area of polymicrogyria on the right frontal lobe, meaning the grooves in that area of his brain had failed to develop properly. It was suggested that we might want to consider a late termination and we were devastated.
We would then go through weeks of repeat sonograms and consults. We saw a neurologist who told us that our child would be at high risk for a severe to profound intellectual disability, seizures and cerebral palsy. That there were milestones our child would possibly never hit and it was possible he'd never be able to care for himself. Then we saw a surgeon who told us that there was "a lot of room for hope" and that occasionally he saw kids with such abnormalities that were only slightly impaired or not impaired at all. We were told by the doctors at the fetal center that due to the rapid acceleration in fetal head size, I would need a cesarean delivery and that they were concerned about "maternal tissue damage". We dug our heels in and braced ourselves for a difficult delivery and lengthy NICU stay.
But mostly, we cried, prayed and leaned on our family for support. Our church family prayed and fasted with us. By the strength of Christ, we made it through those weeks with our faith and hope still intact.
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