I woke up this morning with butterflies all in my stomach. I knew we would find out what was going on with Caleb and I went back and forth in my mind on whether or not I even wanted to know. We waited almost 2 hours before we saw the doctor. Making an already nervous, anxious momma wait 2 hours should be a felony or something. Or they should at least pass out doses of versed. When we finally saw the doctor he pulled up all the MRI images on the computer so we could see what he was talking about. They checked Caleb's brain to make sure the shunt is working and everything looks good there. There is a small pocket of fluid in the spinal cord, it is located in the neck area. Caleb has had this pocket of fluid for some time, it was present on a MRI he had over 3 years ago. We weren't really surprised by the pocket of fluid, although it does look like it might be bigger than it was when Caleb was 3. The neurosurgeon did say that the pocket of fluid can cause loss of function but with the location of the fluid being so high he would expect Caleb to have lost function in his arms and hands...which we have not seen. He did show us that Caleb's cord is tethered and is likely the cause of his loss of function, although we can't be certain until it is fixed. My gut tells me it the tethered cord causing the issues. He said that tethered cord surgery isn't typically a big deal but it does become much more complicated in kids like Caleb (SB) who have a shunt, who have Arnold Chiari Malformation, AND have a pocket of fluid. There are just a lot of factors to consider when dealing with Caleb. The neurosurgeon described detethering the spinal cord kinda like trying to get gum out of hair. It's difficult and delicate. Because Caleb has a shunt he wants to put in an ICP monitor before the surgery. This will be done while Caleb is asleep. Basically they will monitor the pressure in Caleb's brain to make sure that it is stable before they proceed with the detethering. To place the ICP they have to drill into the skull (I think it sounds way worse than it is) to place a catheter into the brain that will allow them to monitor the pressure. The neurosurgeon said the ICP monitor will only be in for a few minutes and Caleb will be asleep the entire time. There is an additional risk in doing this, like bleeding, infection, etc...but it is unlikely. If the pressure in Caleb's brain is good then they will go ahead with the detethering. He said to expect anywhere from 4 days to a full week in the hospital, with a somewhat lengthy recovery. As we were leaving the office the neurosurgeon complimented me on getting things done so quickly. I told him about my fit over the phone with the nurse and he smiled and said: "I know, I heard." I asked him if I was right to fight to get things moving and he said "Absolutely, you did the right thing.
Surgery is already scheduled for Tuesday, April 3rd.
So, there ya go. I'm thankful that I wasn't surprised because I had already begun to prepare myself for this. I knew in my gut that it was tethered cord and that Caleb would need surgery. But, hearing the doctor say all of that stung a bit. I'm not terribly worried about the surgery itself, I trust the doctors involved and I know Caleb will be in good hands. I am worried about the recovery. I know that he won't really be allowed to move much and will have to stay on his tummy or side for a few days. I'm worried about how hard he will have to work to gain back function. His nerves are going to be in such a state of shock that it will take time for them to bounce back. I hate to put him through this. He's not going to understand why all of this has to happen. He is going to HATE missing school. I just hope that I can keep his spirits up throughout the recovery. This just isn't going to be fun, at all. We haven't told him yet because he is a worrier (he gets that from his momma) and we don't want him to be anxious all weekend.
I trust God and I know that He loves Caleb too, even more than I do. I take comfort in knowing that God knew about all of this long before I did. He is not surprised. He is not worried. He's got this. It is just hard as a momma to see our kids go through anything tough. I wish I could take his place, but I can't. I appreciate all the prayers so much. I definitely feel peace about it all. I have been overwhelmed by all the comments and messages on Facebook. Each one brings me to tears. I especially love the bible verses some of you have shared. I think I'll write all these verses down and keep them with me during this process. Hearing and reading God's word always brings me peace, so keep them coming.
And please pray. For Caleb to not be fearful. For the doctors to have steady hands. For Caleb's recovery. For Glenn and I as we try to juggle everything. Pray for peace.
I just want to enjoy this weekend with my family and not think about surgery right now. I'll deal with it in a couple of days.