We saw the neurosurgeon at the children’s hospital on Monday. Originally our pediatrician thought they might do the de-tethering surgery when David is 2 or 3 years old, but the neurosurgeon recommends we do the surgery when David is 3-6 months old.
I’m scared for my baby to have surgery, but I agree with the reasoning behind it. Sometimes physicians wait to do the surgery until there are signs of neurological impairment (trouble walking or incontinence), but our neurosurgeon prefers to do the surgery before problems appear because occasionally the damage cannot be reversed.
The next step is an MRI to confirm the diagnosis. David will need to fast for 6 hours and then be sedated before the procedure. That’s very frustrating, because our pediatrician scheduled an MRI when David was a few days old, but the neurosurgeon canceled it because he wanted to talk to us first. However, he didn’t tell us anything on Monday that couldn’t be said over the phone. He didn’t even examine David.
Sigh. I’ll definitely be turning to some of you NICU moms for your pro surgery support. I have no idea how I’ll cope with a hungry baby for several hours. My brother has suggested that they sedate me as well.
If I’ve been listening to the doctors correctly, David’s specific condition is called lipomyelomeningocele. It’s actually fairly rare, less common than what’s traditionally known as spina bifida (myelomeningocele). The prognosis seems to be very good, but of course we’ll know more after the MRI.
Thanks to everyone for your thoughts and prayers! They are appreciated!
I’m scared for my baby to have surgery, but I agree with the reasoning behind it. Sometimes physicians wait to do the surgery until there are signs of neurological impairment (trouble walking or incontinence), but our neurosurgeon prefers to do the surgery before problems appear because occasionally the damage cannot be reversed.
The next step is an MRI to confirm the diagnosis. David will need to fast for 6 hours and then be sedated before the procedure. That’s very frustrating, because our pediatrician scheduled an MRI when David was a few days old, but the neurosurgeon canceled it because he wanted to talk to us first. However, he didn’t tell us anything on Monday that couldn’t be said over the phone. He didn’t even examine David.
Sigh. I’ll definitely be turning to some of you NICU moms for your pro surgery support. I have no idea how I’ll cope with a hungry baby for several hours. My brother has suggested that they sedate me as well.
If I’ve been listening to the doctors correctly, David’s specific condition is called lipomyelomeningocele. It’s actually fairly rare, less common than what’s traditionally known as spina bifida (myelomeningocele). The prognosis seems to be very good, but of course we’ll know more after the MRI.
Thanks to everyone for your thoughts and prayers! They are appreciated!
I’m so sorry, Christy. I know surgery for your child is very scary.
Hannah had to fast before her surgery as well. I fed her at the last possible moment she could eat to help her tummy stay as full as possible. We then just kept a paci in her mouth until surgery time. 🙂
Hang in there, my friend. Please know of my prayers.
I love the picture! David looks like you just told him he couldn’t eat for 6 hours. I’d feel the same way, David. About the 6 hour hunger strike – know that he won’t be hungry forever. When you’ve got an inconsolable kid, it’s easy to get lost and feel like it’s going to last forever, but there is a time limit on it. Also, you might want to get confirmation from the anesthesia people (at Vandy it’s call the PATCH clinic) about the hour limit. Breastfed babies can eat closer to a procedure than formula babies – though the 6 hours may already reflect that. I’ve found that often the surgeons don’t actually know the prep routine very well (they depend on the anesthesiologists), so the PATCH people are the ones to talk to. David’s also young enough that they ought to be able to do the MRI with some versed or something like it, without putting him completely under. That’s what they did for Becca’s most recent MRI about a year ago…they gave her the medicine, but her little body processes meds crazy quickly, and it wore off before they got her back to the MRI room, so I just had to get her back to sleep for the test. Anyway, if they haven’t already set you up with a PATCH appointment or phone convo, I’d call them directly (call 936-1000 and ask for the PATCH clinic).
And I hate to tell you, it’s not unusual for a specialist’s appointment to be completely useless in terms of the you-could-have-saved-me-half-the-day-and-twice-the-anxiety-if-you-just-told-me-this-over-the-phone-two-weeks-ago-ness of their information. God bless them.
And of course, I’m happy to come sit with you during any of the tests, procedures, surgery, whatever!