More From Cleveland
It's funny, you think you have more time than you actually do. Especially on this day. Lots of caring for the little guy, visitors and some activity in the whole scenario.
Again, brief as I can be, but I'm not trying to write literature here as much as I am trying to get facts to people.
Bennett is healing well. His body is strong, his will is strong. Today he was awake, and aware, for a while, and doing 'Bennett' type things. He has full movement in all extremities and is using them all. He tracked well with his eyes, he sucked his thumb and played with his tag, and he babbled. When he eventually looked directly at me and said 'Dadda', I sobbed like a little girl. This was less than 24 hours after his surgery. I was not expecting that.
MORE GOOD: The sutures looked great, whoever stitched him up did a nice job, very clean, very precise work.
Still having seizures.
Bennett had a ferocious set of seizures at 11:30 PM last night, after I wrote my entry from yesterday. It was not what I expected, I expected a different kind of healing seizure, not a cluster of spasms. The next day, we tried giving him his oral meds, he puked them up. And we had to come up with some alternatives. He is now taking an IV of something like Dilantin but not that, something whose name I did not write down. I was devastated, but remember, my days are full of huge highs and huge lows, but I'll cover all that kind of stuff in recap form.
In addition to the ones last night, he had another set lasting 4 minutes around 5 minutes ago, Jen just called and told me. She wanted me to ask any surgery Moms and Dads out there how many post surgery seizures your children had and were they the same type? This clearly has us very on edge.
Now, the neuro-surgeon has not ruled out that we might not see a few more, that isn't how we judge success/failure of the operation just yet. We need to give that aspect of it some time I am told. But you can only imagine how this makes us feel.
He is still in ICU, running a fever for a while now. Nervous about that. Do not want to see infection. His MRI was today, so far I don't have any answers about what they saw today. Still in a lot of pain and discomfort and all I want to do is hold him and I can't. The wound is still bleeding a little, so they changed the dressing and are keeping him in ICU one more night.
Now...if you are squeamish, now is your chance to bail. Just stop reading, because I am going to show you the photos I took of the changing of the dressing. There is blood. But hell he's my son, and despite all of that he is still beautiful to me. If I can handle it, so can you. But if not, just wait until another post to read further.
USE CAUTION BEFORE SCROLLING DOWN, YOU HAVE BEEN SUFFICIENTLY WARNED.
Some might question why I would post those. I don't. He is my beautiful son and despite what I see, I still see that beauty and I see hope and potential in that pain and disturbing imagery. If we can just figure out if these post op seizures can end. They need to. Soon. Is it intense? Sure. But I have always put it out there and always will.
At the end of the day, always be true to who you are.
By the way, I'd recommend the Cleveland Clinic to ANYONE wanting to have their child taken care of for a condition such as epilepsy. They REALLY know what they are doing and man they were all pros about their jobs and roles. It has been uncanny.
And now, I am going to go collapse in a heap, I'm exhausted.