An update has been a long time coming! Simon is now a happy first grader! He has been growing very quickly, and he is doing well in school. He attends speech therapy twice a week, and he has adapted nicely to wearing hearing aids in both ears. Unfortunately, with all this good news, there's some bad news too. It looks like he will be having a third surgery to once again cover up some defects.
For this surgery, all they need to do is cover up holes, making the procedure much less invasive than the previous two. The talk so far is of taking some skull bone from above his ears and splitting it like an Oreo cookie in order to do a bone graft. The bone pieces will be held in place by plates and screws that his body will eventually absorb. Supposedly, he will not need a blood transfusion, but I have heard that one before. For the last surgery they initially said that, and they ended up using all the direct donation blood due to excessive bleeding from scarred tissue. I think that I will send out the call again for our O+ peeps.
The cost for the surgery this time around will be double the previous time. Yes, you did read that right. My out-of-pocket maximum the last time was $5,000 total. Now, it is $10,000 per insured patient. I am already in a panic about this but keep reminding myself that I am pretty good at ignoring nasty letters as I send in $20 a month on these sorts of bills. It is not like we own anything outright for them to sue us and take. As if this sort of thing were not stressful enough, right!?
Speaking of stress, I honestly feel like I am on the verge of falling apart this time. It seems like it would be so much easier to just let it go and see what happens over time, but then I see the spots on his forehead pulsing. It would not be fair to leave his brain so vulnerable, thus limiting his activities. We have to take care of this for his future. How do we know if we are going about it the right way, though? Remember, this will be the second attempt at a fill. Will the bone graft take, or will we be facing the OR again in 2 more years?! I sure do wish that we could either have a miracle occur in the next 3 months or find a crystal ball to help us make the best decision.
Being a parent is hard enough without these sorts of decisions to make! We want what is best for our child, but how do we know what is best?
