W CHOSE to come to the hospital over school...which is amazing...and just fine by me. He hadn't been to the hospital "for fun" in a while. So, while he spent time in Emily's Backyard, R and I were in the Neuro Clinic. Thank heavens for EB. It's a fabulous, supervised play room for patients and/or their siblings. It's been a godsend for our family. Plus, I think it's good for W to come sometimes and feel included in all the hustle and bustle of hospital appointments.
What did we learn today?
Topamax is now a part of R's med regime to try and stop the seizures from rearing their frightening heads. Especially after Monday's episode.
Surgery is still on the radar and we meet with the Neuro surgeon in 10 days-ish.
MRI still end of June and now has the interictal spect added to it. Wuhoo! Thank goodness...because an ictal spect would just be ug-e-ly!
Today....I just felt sorry for us. Sad and sorry. Not wanting to go this route but knowing we really have no choice without robbing R of his development. But I was still sad. Came home and buried myself in the covers for 30 min for a tiny tear or two and a good old ostrich approach. I even set the alarm. 30 min was all I allowed since there are two little boys who need me to be present.....even when I don't feel like it. It's part of the parenting contract. Be present no matter what.
Who needs the paddles to get your heart going when you hear that "you are lucky he is doing so well cognitively. The amount of tubers he has in his brain....he shouldn't be doing this well."
There was an inner gasp at that.
Yes, I know we are lucky. I know that in all my heart but hearing that did not make me feel lucky. I'll get over it and feel lucky later....right now, I'm doing a little wallowing.
"Everyone" always asks if Bup seizes in his sleep. Which gets on my nerves. I do not sit up and watch him at night PLUS with his type of partial complex seizures the naked eye would never tell. Today it was confirmed.
The VEEG showed lots of activity during sleep.
Which explains part of Monday's events. First, R slept until 1030am!!! I LITERALLY checked to see if he was still breathing.
Upon waking up, R had a nose bleed that lasted for the most part of an hour. It was not a happy day. Just clingy and whiny and teary and wanting to be carried. Carried! Uh...Mr. 24.5 kilos...my aching everything!:)
Added to the sadness, is that R was holding his right arm stiff with a clenched fist or he would fold it against his chest. This lasted until about 13opm and then it was like a light switch flipped. R became the happiest, friendly, regular little self. Weird. Disconcerting.
Definately seizure activity.
Which explains the long sleep. Post ictal.
And so the light bulb turns on and the reality that things just may be progressing in a manner that we do not want for R therefore the need for an additional med.....and (gulp) surgery.
That's what's shakin' here.
I've found that doctors say the stupidest things. Lucky my big fat *&$#. No one who has to wrap their hearts and minds around their child having their brain hacked into is lucky. NO ONE. Do we know that we're "blessed" to have this as an option for our kids? Of course. Of that our kids are more "cognitively developed" than they could be? Yes. We live with them after all. But would to God that we never knew that such nightmares existed outside the walls of the theater.
ReplyDeleteI'll have to share with you my stupid doctor speak moment of the week later...
I'm sorry, hon. I'm so sorry.
Melting is good for the soul every now and then. You let it out. Which makes room to let courage back in... and then you roll outta bed. Snuggle your little men. And move forward...
xoxo
...d