So we just did a week of doctor's appointments. Most kids have a pediatrician and maybe a dentist. Zelda and Creed have a neurosurgeon, an Infectious Disease doctor, a pediatric opthamologist, a neurologist, a retinologist, as well as a retinal surgeon in LA and a Toxo Team in Chicago. Oh, and their pediatrician. We'll save the list of Zelda's therapists for a later entry.
Anyway, last week was our trip to Houston to see our favorite Tiki Gods - the neurosurgeons. As it turned out, the residents & interns have moved on and the other head Tiki has gone off to San Antonio so only one lone god remains. The twins have to check in every so often and have head CT's to make sure that their shunts are draining the fluid from their little brains in an appropriate fashion. They have had more CT's than I can possibly count so this time we were well prepared despite the fear of having to sedate them so they would hold still long enough. Anesthesia is definitely not their favorite experience nor is it mine when a 2 year old is involved. Luckily, they managed to avoid the sedation...could we possibly make it through 2008 without anesthesia? Their brains look great and the shunts are working. Creed's ventricles have actually shrunk and Zelda is perfectly stable. They will have these shunts throughout their entire lives and we just always will have to be aware of possible malfunction. But so far, so good!
This week, we saw their ID doctor. We check in with her to follow any reactivation of the evil Toxo Parasite. They'll live with this for their whole lives as well. C & Z are doing great! Having had the twins on their drug "cocktail" for the first 17 months of their lives has hopefully drowned those damn bugs - as least for now.
And then we saw their opthamologist...Creed's strabismus seems to be evening out. Months ago, his right eye - which has a scar on its retina from the Toxo - would turn in on occasion. Now it hardly turns in at all. Creed was a perfect patient. He performed like the perfect little show monkey - taking the tests, sitting still, curious and quiet. La petite Z-bomb earned her name accordingly. She exploded. No one can get near her eyes. She seals them closed and will have to be sedated this summer for a retinal exam. Damn! 2008 will not escape the anesthesia curse...If the Toxo was to rear its ugly head, it would most likely appear in the eyes so we have to be vigilant.
Anyway, we're readying the twins for their Montessori summer camp program. That means a visit to the pediatrician for their immunization records...
Showing posts with label Tiki Gods. Show all posts
Showing posts with label Tiki Gods. Show all posts
Thursday, June 5, 2008
Wednesday, April 11, 2007
The Tiki Gods & Hydrocephalus
This is not a story about the Easter Islands and a mythical creature. It's not a bedtime story that I read to the twins. I guess that everyday I could go on, waxing poetic about the joys and trials of raising Creed & Zelda BUT, that's not what this is about. Yes, our twins are great, funny, sassy, suuuuper smart and enormously talented. They do amazing things that no other toddlers have EVER done before! Uh-huh.
But I need to talk about the Tiki Gods. Our kids are where they are today thanks to the Tiki Gods. These guys are the neurosurgeons that treated our babies during their stay in the NICU at Texas Children's Hospital. They are Dr Robert Dauser, Dr Hatem Megahed, Dr Justin Brown, Dr Thomas and their faithful nurse Sharon. They would emerge silently in NICU at 6am, measure the kids' heads and jot down their incomprehensible scribble of notes. Evan would often lay in wait, we called it "trapping a neurosurgeon." They would then appear again on rounds, stoic, taciturn, unrevealing unless pressured to give answers. What began as a combative relationship of "Sure, we'll just throw a shunt in there and see what happens" turned into a relationship a mutual respect and often humour. Dr Dauser regaled us on a daily basis with a joke or two and still does when we have our 6 month check-ups. We had code-names for all of them and Evan created the Tiki Gods cartoon.
Upon discovering the congenital toxoplasmosis raging through the bodies of our twins, we also had to look carefully at their brains and their eyes. These are the 2 areas that are greatly affected by this infection. Having already told you about the eyes, let's talk brains. Both kids had hydrocephalus that is, swollen ventricles. Fluid was building up in their little noggins and this fluid was placing pressure on their developing brains -and at some point would hinder their growth and therefore their development. So, what does one do? One gets the Tiki Gods to first, tap the brain - that is, insert a long needle into the area and pull off some of the fluid. The baby screams bloody murder and the parent hides off to the side. I cannot tell you how many times both of the twins have had to endure this procedure. The CSF (cerebral spinal fluid) can then be tested to see if it grows any infection or if it's clear - then they can proceed with surgery.
Now, 18 months later, both of the twins have double VP (ventricular peritoneal) shunts - there is a small drain piece in their brain that is attached to a tube that runs down the side of their neck into their abdomen.* The fluid naturally drains off of the brain, therefore avoiding build-up or pressure, and then travels down the tube. It empties into their abdomen and is reabsorbed into their system. Each of the babies has a VP shunt on each side of their brain - we call it "dual exhaust" or "stereo". At first, one could see the lumps under their skin directly behind their ears. Now, their hair as grown over - thank the Lord! - and we don't even notice the shunts.
Will they have them in forever? Probably.
Do will still have to watch for infection? Yes, it's always a possibility.
Will they have to wear helmets when learning to walk? No, no and no.
Will they be able to head a soccer ball? Wouldn't recommend it.
So, thanks to the Tiki Gods our kids have regained the normal use/growth of their brains. It could have been a scary situation. They continue to develop normally and look like any other kids out there - they just have tubes in their heads.
*Zelda had her 1st shunt put in at about 6 weeks old - she technically wasn't even born yet! That shunt became infected and had to be removed. It was then replaced 3 months later before she was discharged from the hospital. She had a shunt revision (it had become clogged)in August of last summer. A few days later, a 2nd shunt was placed. Total brain surgeries: 5.
Creed had his first shunt placed at 3 months of age while still in the hospital. Upon discharge, he went back in at the age of 9 months and had a 2nd shunt placed. Total brain surgeries: 2 - plus numerous tappings.
www.preemies.org/buckwal/shunt.htm
But I need to talk about the Tiki Gods. Our kids are where they are today thanks to the Tiki Gods. These guys are the neurosurgeons that treated our babies during their stay in the NICU at Texas Children's Hospital. They are Dr Robert Dauser, Dr Hatem Megahed, Dr Justin Brown, Dr Thomas and their faithful nurse Sharon. They would emerge silently in NICU at 6am, measure the kids' heads and jot down their incomprehensible scribble of notes. Evan would often lay in wait, we called it "trapping a neurosurgeon." They would then appear again on rounds, stoic, taciturn, unrevealing unless pressured to give answers. What began as a combative relationship of "Sure, we'll just throw a shunt in there and see what happens" turned into a relationship a mutual respect and often humour. Dr Dauser regaled us on a daily basis with a joke or two and still does when we have our 6 month check-ups. We had code-names for all of them and Evan created the Tiki Gods cartoon.
Upon discovering the congenital toxoplasmosis raging through the bodies of our twins, we also had to look carefully at their brains and their eyes. These are the 2 areas that are greatly affected by this infection. Having already told you about the eyes, let's talk brains. Both kids had hydrocephalus that is, swollen ventricles. Fluid was building up in their little noggins and this fluid was placing pressure on their developing brains -and at some point would hinder their growth and therefore their development. So, what does one do? One gets the Tiki Gods to first, tap the brain - that is, insert a long needle into the area and pull off some of the fluid. The baby screams bloody murder and the parent hides off to the side. I cannot tell you how many times both of the twins have had to endure this procedure. The CSF (cerebral spinal fluid) can then be tested to see if it grows any infection or if it's clear - then they can proceed with surgery.
Now, 18 months later, both of the twins have double VP (ventricular peritoneal) shunts - there is a small drain piece in their brain that is attached to a tube that runs down the side of their neck into their abdomen.* The fluid naturally drains off of the brain, therefore avoiding build-up or pressure, and then travels down the tube. It empties into their abdomen and is reabsorbed into their system. Each of the babies has a VP shunt on each side of their brain - we call it "dual exhaust" or "stereo". At first, one could see the lumps under their skin directly behind their ears. Now, their hair as grown over - thank the Lord! - and we don't even notice the shunts.
Will they have them in forever? Probably.
Do will still have to watch for infection? Yes, it's always a possibility.
Will they have to wear helmets when learning to walk? No, no and no.
Will they be able to head a soccer ball? Wouldn't recommend it.
So, thanks to the Tiki Gods our kids have regained the normal use/growth of their brains. It could have been a scary situation. They continue to develop normally and look like any other kids out there - they just have tubes in their heads.
*Zelda had her 1st shunt put in at about 6 weeks old - she technically wasn't even born yet! That shunt became infected and had to be removed. It was then replaced 3 months later before she was discharged from the hospital. She had a shunt revision (it had become clogged)in August of last summer. A few days later, a 2nd shunt was placed. Total brain surgeries: 5.
Creed had his first shunt placed at 3 months of age while still in the hospital. Upon discharge, he went back in at the age of 9 months and had a 2nd shunt placed. Total brain surgeries: 2 - plus numerous tappings.
www.preemies.org/buckwal/shunt.htm
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