No Time to Cry. . .

Hmmm... Not sure what to say this morning.  I'm beginning to think it's my second "two week mark." Or maybe there's a new thing called the "One-Month-Mark."  But instead of curing it by unpacking, we are packing up and moving again.

This surgery, for me, has been the roughest one to endure.  Not sure how Brendan would rank them, but this one has been pretty miserable.

 Brendan came out of this neck dissection surgery in a lot of pain.  He was crying and shaking and pleading to be put back to sleep.  Tears welled up in his eyes.  He complained (of course) that his neck hurt.  It was hard for him to move with the drain coming out of the left side of his neck.  Shaun and I were both surprised by the length of the incisions on both sides of his neck.  Both incisions come down so far to the middle it almost looks like they meet.  We found out this morning that some of the muscles on the left side were cut and lots were stretched to get the lymph nodes out. So it is very hard for him to turn his head. Swallowing is difficult and he talks like everything down there is swollen (which I'm sure it is).

 One of the first things checked after surgery was to see if Brendan could stick out his tongue and move it side to side.  He could.  Then they checked to see if he could lift his arm over his head.  He could.  Good signs that the nerve damage in his neck was minimized.  Physical therapy will be here soon to work with that arm to make sure it doesn't weaken since the nerve going to his shoulder was stretched quite a bit.

 I never realized just how many nerves could be cut or damaged by neck surgery.  Shoulders, pupils in the eyes, tongue movement, swallowing, breathing, eyelids,  smiling (and many more) could be affected.

Yes, those are tears. . .

 Coming out of PACU (don't remember what that stands for- it's the recovery room),  we were sent to the CSU (Children's Surgical Unit) on the 3rd floor.  Waiting for Brendan come out of surgery we were told to leave our stuff on the 4th floor.  They were hoping he would come back there.  But we found his records had been sent to PICU (Pediatric Intensive Care Unit).  He fared well during surgery (no breathing or swallowing difficulties) so we were sent to the surgical recovery floor so they could watch his drain.

My late night dinner in the Ronald McDonald kitchen (after getting Brendan settled into his new room).  Many thanks to the Wellsville Mia Maids for leaving one bowl of spaghetti in the fridge for me to reheat!

Last night, as we settled into the new room, the night nurse came in to "orient" me to the hospital.  I found myself frustrated as I politely sat there listening as she went through all 50 pages of the book telling me about this and that about hospital resources.  I felt like I should be giving her the orientation.

This morning I'm feeling the let down of another difficult surgery, and the build up to radiation and chemotherapy. There's not much time in between.  During Brendan's surgery yesterday, we talked with the oncology doctor about what to expect with chemotherapy.  This is just so difficult with how rare this tumor is.  We discussed things I had never thought about -- like how to tell if chemo is working if we have removed all the tumor.  And what do they do if it ever comes back . . .Whoa! There is so much more going on than I will ever completely understand.

Today, I just want to cry.  But every time a tear leaks out a corner of my eye, someone walks in to check on Brendan or to talk to us about scheduling hearing exams (set on Friday),  radiation re-simulation (now on Monday), and the start of radiation treatments (sometime Tuesday), chemotherapy (looks like Tuesday) -- continuing outpatient therapy (check back in three months) continuing inpatient therapy (occupational and physical and speech, every day). . .
There is just no time to cry.