Saturday, April 16, 2011
So....the news on surgery front is more pieces to place into the puzzle.
R's case was presented at rounds and the feedback is that a SPECT needs to take place. Which I was really hoping to avoid. Not sure how it will unfold and will not find out more until May 4th as that is our next appt with Dr. B...he is on vacation at the moment.
This week we met the Child Life Specialist who will be helping R with his hospital visits. Desensitizing in regards to care around his face and head. Uh yeah (as R says to me) cause putting lotion on his face, washing it, etc is likened to sticking hot pokers in his eyes. That fun!
We ran into the EEG Tech in the hallway Miss S. While chatting with Miss S R reminded her that "I cried and said your butts getting bigger."
It was old home day at the hospital as we then we bumped into our neuro nurse....twice...and the other Child Life Specialist, Miss J...to whom R hissed at. Yup! Pretends to be Kevin from UP when he's feeling scared and shy. Friendly child or snipe that I am raising.
So who knows what's happening next. I'm unsure. It's all up in the air and I still don't want any of it. R had one "wiggly hand" tonight, and that's the first seizure he's had in days. Wuhoo! Maybe all this talk of surgery is an over reaction? How do we know? So much of these decisions are based on possibilities and probabilities...maybes...which is why B and I refer to TS as the Maybe Disease. Maybe....maybe not.
I still prefer that surgery and further tests not be in Bup's future. *sigh*
Sunday, April 3, 2011
We expected to hear more information last week. However, as the health system goes, answers rarely come quickly. Ever heard of "too many cooks in the kitchen"? Which is a good thing I guess as we know people aren't making rash decisions.
The outcome of R's VEEG stay in the hospital. Is one that takes our breath away, B & Me. It is one that we never wanted to hear. It is one that from TSC day 1, I have always said in my heart and head, nope, not for us. Please don't ever let this be for R.
The reasonable, kind, gentle, friendly bedside, filled with knowledge neurologist Dr. B is suggesting that the best route to go for R would be to remove the tuber (benign tumor) from his right temporal lobe.
The meds aren't holding these temporal lobe seizures at bay. He is at the top of the doseage scale for Trileptal. There is a 3% chance that other AED meds would have a positive affect. The side effects from these meds aren't worth the trial and error effort and then disappointment of 3% odds.
There is an 80% chance of surgery stopping these seizures.
If left as is....the seizures will intensify. Memory and cognitive development will be affected. Also, there is a correlation between temporal lobe tumors and Autism.
I don't like it. Not one little bit.
Even with the reassurance of how often these surgeries are successfully done by R's doc.
So...now we wait.
R's case was being presented on Monday to the overall Neuro team. It needs to be a consensus, not just Dr.B's decision. Two other little guys were being presented on Monday and each case takes hours...literally...so I don't know yet if Bup was really discussed. My two phone calls and two emails have been heard/read, but not responded to.
The MRI needs to expedited from June22 until like now!
There will be no grids. No PET scan either. Does this mean it's all very straightforward? I hope so.
Surgery could take place within 1-2 months.
I have my own research to do.
And so we wait. And hold our breath...hold our squishy little boy close....while his future is held in other hands.....while we secretly shed tears...and get angry....and scared....and wait.....
Saturday, April 2, 2011
6 yrs ago today spring was here, the sun was shining, there was no snow, and small sloughs in the ditches...all natures symbols of new beginnings as my Favorite Husband and I prepared to marry.
We were blessed with good friends and good brothers to help us with the last minute details as little things were delivered to the hall, hair was done (mine not B's!) suits and dresses were donned and then a dash to the hall for our early evening wedding.
Nervousness was not a part of my mindset. I was confident. Happy and ready. Ready to become Mrs. B.
And now here we are, 6 yrs in as Mr and Mrs B. Much has changed. Jobs, bodies, children, etc. But not love or pride. That's still there. Sometimes I hide it....when I'm over tired and grouchy (which is much too often)....but it's still there, always. Add to this love, pride. I am proud to be Mrs. B.
I love you Mr. B. Then and now, 6 yrs later. Happy Marriage Birthday to you.