[Samuelsmommie]

Hello everyone,

Thank you all for your prayers and support, I know Jacqui started a thread about Samuel. Thank you Jacqui for keeping everyone updated when I can't. Ok as many of you know my 2 year old was diagnosed with a Chiari malformation a few months ago, long story short he was referred to a neurosurgeon and we were praying that they would be able to monitor his condition and she (neurosurgeon) had that same hope as it didn't look that bad. But she needed to get an MRI of his spine to rule out a tethered cord etc., we took him in last Wednesday for that. Sammy was sedated and scan preformed. He had a really difficult time coming out of the sedation this time and had a lot of vomiting so we kept him in a quiet room, lights off me rocking him until the doctor was ready to see him. When they were ready we took him straight into the room and doctor came right in and I could tell she really just didn't want to tell me. Unfortunately they found (short name) a syrinx, which is a collection of spinal fluid about mid way up his spine and it is causing a "significant" space. It is due to his Chiari and they have no choice but to operate to fix the Chiari. We called his pediatrician and other doctors everyone is in agreements. They wanted to do it before Christmas, but I asked if they could wait and at least let him be happy and pain free for the Holidays she said yes but that we really needed to take care of it afterwards. His surgery is set for January 15,2013.
Words really can't express how devastated I/we are. She was very upfront and honest about how serious it is and the amount of pain he will be in. The surgery itself will take about 4 hours and then he will go straight to ICU were he will remain for the first 2 days sedated. The are concerned because of his sensory issues (not knowing if the surgery will fix that) how he will handle the pain as well as how he will wake up from the anesthesia (because of the previous vomiting) so they don't want him vomiting or straining and possibly tearing the graft that they will have put in place when they remove a piece of his skull, because that would mean they would need to go back in and repair it. Then they will slowly start to wake him up. He will likely be in the hospital 5-6 days.
In 6-9 months they will repeat MRI to make sure the syrinx has corrected itself. If it hasn't and the initial surgery has held not a lot of scar tissue or any reason to indicate it wasn't a success then they will have to operate and put a shunt in to drain the fluid.
His doctor is a pediatric nursurgeon who has preformed this surgery many times over, she actually did one the day before she had to tell me about Sam. Please only post positive comments, yes we've had other opinions etc. I don't need to go into this second guessing myself or his doctors. I'm trying to hold it together and do what's best for my baby.
Again thank you all for your prayers and support, well wishes etc. Right now our focus is making sure Samuel has the BEST Christmas ever. My faith is strong it has NEVER wavered, but I am human and a mom and I carried this lil boy in my womb, put my life on the line (literally) to have him so I'm hurting in a major way! But I know that God has a purpose and a plan for my Sam's life and even though I can't see it right now through my tears, I still KNOW it, he will do GREAT things!