A note about this adorable picture: This is Bean and Jesula/Jesi together visiting in Ohio when we were there. Heather, Jesi's Mom would like a disclaimer regarding Jesi's Hair-do. Daddy did her hair and he likes the big bows. :) Aren't they adorable together?Heather is on her way home from Africa right now with their new little boy. Please keep them in your prayers for a safe homecoming. :)
Thanks.
Yesterday we spent most of the day at Children's with Bean. My sister was kind enough to take off work and take us. (Along with Grace and Cole.) We weren't sure if we were going to be gone overnight or if we would be able to come home yesterday. We did make it home.
Basically here is the situation:
Bean's MRI showed that her shunt tubing is intact and her ventricles are small. (So they do believe that her shunt is working.) However there is an area of fluid in her cerebral horn that is full of fluid. This area is not communicating with the rest of the ventricles that are being drained by her shunt. Basically it is in it's own little pocket and closed off from the rest of the places. So they feel that she needs another shunt, not a different shunt, but an actual additional shunt to drain this area of fluid. They would likely tap the new shunt into the existing one.
This may or may not take place in two weeks. (More about that in a moment.)
Her spine if filled with fluid. This is called a Syrinx (I hope that I spelled that right.) This is likely due to her Chiari's and might be because of the fluid in her cerebral horn. Doing the additional shunt might relieve enough of the pressure and "tightness" in her brain that it might help resolve the syrinx.
If not, then they will definitely do a decompression surgery. They would remove part of her skull as well as some of her higher vertebrae. It would hopefully help to give enough space for the chairi and fluid/brain etc. so that it would stop causing the fluid to pool on her spine and relieve the syrinx. For those medical buffs out there, they would not open up the dura at all. They said with children with SB, there can be too many anomalyies and that they don't typically open the dura and do a dura patch because it can get far too complicated and doing the skull and vertebrae is typically enough.
It was very scary being asked if she can still move her arms and hands. I know that the fluid on her spine could completely paralyze her. The brain decompression surgery would take place six weeks after the shunt surgery. (They will follow up with an MRI and then see if the decompression still needs to be done.) It's a pretty involved big deal, and I am praying faithfully that they won't need to do it!
So does she need her tonsils and adenoids out next week?
We still haven't gotten an answer. Ugh. I was thinking about Dr. A. and how if there was some kind of question ever about anything related to one of her "girls" she would whip out the cell phone and get people on the phone and get things resolved in a flash. While I really do like our NS team at Children's.... it's not quite as "personal" as the experience in working with Dr. A. I asked our NS if he could talk to the ENT and figure out if she needs the sugery next week. (There are several issues: If she has the ENT surgery next week, she WILL NOT be able to get the shunt surgery the following week for risk of infection.) SO what is best to do? Well they said: "It's basically up to you."
Um... I don't think so.
I didn't go to school for however many years it takes to make decisions like this. I feel unprepared and not informed enough to make this kind of choice. So I asked the NS to talk to the ENT. He said to get the ENT to call him and he would be happy to talk to him.
Ok.
So I march 20 feet over to the next door (Otolarynology/ENT) and ask to talk to someone about what is going on. The doctor isn't in and they tell me it would be best to get the the NS to contact the ENT. (Is this middle school? "If you like me, check yes or no on this note!" hello people, you work 20 feet from one another, how hard would it be to connect and communicate?)
So then I go back to NS, and let them know that they need to tell the NS to email the ENT to see if they can get some answers and get them talking. The nurse rolls her eyes, like I am asking for her to get the NS to move mountains. I realize that my little baby might not be your top priority, but she is MINE. And if these two people can't communicate with one another, I WILL BE THE ONE up there cracking skulls!
So we decided that her "pre-op" anesthesia appointment that was this morning was really null and void considering we have no "real" plan at this very moment. The surgery is still scheduled for next week so prayerfully by tomorrow, we will have a "PLAN".
I am fairly sure that no one will tell me what is causing the sleep apnea. Even with a sleep study, they won't be able to tell me if it's her tonsils/adenoids or her chiari's/syrinx/hydrocephalus. However, it is likely BOTH things that are contributing towards the sleep apnea.
So, what is the appropriate plan here professionals?
Please continue to pray. I will update you all as soon as I have a plan.
On another note: My grandma (Dad's Mom) is back in the hospital again. Please send her some prayers too. :)
Sorry for so many requests.
Much Love and thanks,
Sarah





































