Wednesday, May 30, 2012

Dates

Yesterday, I realized that I had not updated the blog with our schedule.

Monday, June 25:
Drive over to St. Petersburg for a 10:00 a.m. MRI followed by a 1:30 p.m. visit with Dr. Tuite

Tuesday, June 26:
Placement of a Camino Intracranial Pressure Monitor

Wednesday, June 27:
Surgery

Tuesday, May 29, 2012

Paperwork and Feelings

I can't believe that surgery is less than a month away!  I vacillate between calm and worry from day to day, and my best coping mechanism is to put my full focus on what needs to be done each day as a wife, mom, and teacher.
For the surgery preparations, I called the Ronald McDonald House today and got us on the waiting list to check in on June 25.  I just have to call again that day to see where we are supposed to go.  I guess that they have multiple houses by All Children's?  I do hope that we are somewhere within walking distance like we were with Arnold Palmer.  I also sent the directed blood donation paperwork to Dr. Ricalde today.  My blanks are filled out, complete with the names of 3 donors.  (Thank you, Michele, Amanda, and Valerie!)  Now, the surgeon has to fill in details and fax it to the appropriate office.
With each little step, I feel both relief and dread.  We are that much closer to getting it over with, but we are also that much closer to being there.  This time around, I don't feel like our lives are going to drastically change for the better when the surgery is done.  For the last surgeries, I knew that Simon needed relief from the pressure on his brain; and I looked forward to seeing my son recuperate and move forward.  I can't describe how it feels to see your little baby withering away and going backwards in development or to deal with your pre-schooler not communicating well and not sleeping well.  I knew that he needed the procedures done to make those bad things stop happening, even somewhat if not fully.
Once the surgeries were over and he had time to heal, Simon bounced back and caught up at lightning speed, bringing us much happiness and hope.  He had nearly full recoveries.  This time, the biggest change will be that I will not see that pulsing on his forehead and worry that he is going to get hit in the head somewhere.  I also will not have to wonder what is going on in his skull, as the MRI and ICP monitor should give us some clear answers.  So, good changes will happen, but my mind keeps questioning whether we absolutely have to do this or not.  My mind has actually questioned every time, even though it was illogical.  Maybe that is part of my defense system as a protective mommy?
I worry that he will somehow end up backwards, after making so many gains with his speech and academics.  I worry that he will come out with a different personality and not the happy, sweet kid who is absolutely my world.  He will always be my world, no matter what.  Still, I can hope that he is my same son.  Again, these are "normal" worries with this sort of surgery, but the knowledge that they are normal does not stop me from having them.  I just have to remind myself that, no matter what happens, we are doing the best that we can with this situation.  I have to pray that God will guide the surgeon hands and hold our hands.  I have to pray that Simon will come roaring back like the champ that he is.

Friday, May 11, 2012

Slight change in surgery date?

The surgery date might change to June 27.  They are thinking about doing some monitoring for intracranial pressure and may need the extra day in between the MRI and surgery to do so.  I will keep everyone posted.  It does not affect us, the patient and parents, but I know that some people are trying to arrange work schedules around it. 

Tuesday, May 1, 2012

Blood Donation Time = More Worries

The craniofacial surgeon sent the paperwork for the blood donations today.  I may have a Master's degree, but this stuff is confusing me.  Can I chalk it up to being tired right now?  One thing that leapt out at me, though, is that they do not advise using the same donor twice.  What do we do, then?  We have had 3 people do directed donations for both surgeries.  On the second surgery, two of them donated, and both units got used.  On the first surgery, three of them donated, and two units got used.  We know whose one of them was, and we are not sure about the other.  Who do we call?  What exactly is the risk of using, possibly, the same donor three times?  How am I supposed to sleep at night with these sorts of questions bouncing around in my head!?