Thursday, May 24, 2012

Playing the Numbers Game

Ronny's blood tests came in late yesterday afternoon.  The doctor had originally said that if his pth level comes back over 40 he would be concerned of a second tumor.  Ronny's came back at 44.  In general this isn't considered high but following his surgery it was as low as 25 so it is heading in the wrong direction!  His blood calcium is at 10.2 this level is considered high at 10.3, I believe.  This also should have come down following surgery from what the surgeon told me when he came out to see me after the surgery.  So neither number is technically high but they are on the higher side.  Ronny's body could still be trying to regulate after having the tumor removed, however its been over a month so I'm not sure if I buy that so much.  He wanted to see Ronny back again in August for another follow-up.  If his pth continues to climb he'll most likely be sent back to the endocrinologist for another ultrasound to look for another tumor.  The surgeon thinks that if this is the case the tumor and gland may have moved down into his chest which doesn't make things easier.  So for now we wait.  I do have to say though that we are getting better at this waiting game, not sure if that is a good thing or not though at this point.

Tuesday, May 22, 2012

Statistics, blah!

Ronny met with his surgeon up at Huntsman today for what we thought would be a simple post-op follow up.  He had blood work done last week with his regular doctor for his thyroid and they ran a blood calcium then.  We noticed the results were still on the high side.  His surgeon had those results today and was concerned that it was still so high.  He said that number should have come down after taking his tumor out.  He is concerned Ronny may have another tumor that he didn't see when he was in surgery.  He ordered more blood work before Ronny left specifically looking at his calcium again and also his pth level.  If his pth level is higher than 40ish that probably indicates a second tumor.  If that is the case Ronny will get referred back to the endocrinologist for another ultrasound to find it and probably another surgery.  He said he will call tomorrow with the results.  He said the odds of people having 2 of these tumors is around 1%.  I laughed out loud when I heard this as we seem to always be in that 1%.  I was a math major in college and I HATED statistics, given all these crazy numbers they keep throwing at us my opinion still hasn't changed!!!  However if we could turn these numbers into something like say the roulette table we could make a killing in Vegas, maybe then we could use that money to pay off all these hospital visits!

Thursday, May 17, 2012

Happy Birthday Angel Boy

This day holds many memories for me.  Painful ones but mostly joyous ones as I'm sure September 28th will as well.  I think I will start the tradition of going to the temple on Aaron's birthday, its the place I feel the closest to him, a place where I will always find peace.  Ronny and I have talked a little about the traditions we will start surrounding the important dates of Aaron's life.  We want them to be meaningful not only for us but for our children.  A good friend of mine that lives just around the corner urged me to return to the temple just after Aaron passed and has invited me with her each week.  I am grateful to her for her sincere and considerate reminders to return to the temple. Having her to go with makes it much easier and she doesn't seem to mind my quiet tears and doesn't get frustrated with me when I can't make it work every week.

This year we went to dinner and wrote letters to Aaron while we waited for our food.  We attached our notes to balloons.  Charley asked why we were doing this, Ben told her matter-of-factly that we needed to get them to Heaven and the balloons would take them there.  He was very excited to send his balloon off and sent his a little early but I'm sure it made it where it needed to go.  Later, after the rest of us went to bed Ronny went to the NICU and took a few cases of Diet Coke with him.  I was sporting a major migraine by that point and sent him on his way.  I'm not quite ready to visit yet.  Maybe next year.  He was happy to see one of our primary nurses was charging last night and had a good visit with her.  Earlier in the day I had a good chat with another one of our primary nurses.  It was good to catch up with her and talk about how we were both feeling and how we have adjusted these last few months.  These special ladies that took such great care and loved both Aaron and our family will always be part of us and we think of them often.

Aaron's life taught us a multitude of lessons.  Some by him, some by family and friends, others by those we came in contact with during the journey of his life, and many by our loving Heavenly Father.  As I've gone back and read my postings over the last year, I've started to compile a list of these lessons learned in my head.  I need to start writing them down so I don't forget them.  Recently Ronny purchased the rights to for me.  If you type that in it will also take you to this blog.  Some day I hope to separate these two sites and put Aaron's story and these lessons we learned on that site.  I hope to make it a place for people to get an idea of what life is like while facing the uncertainty of a difficult pregnancy, life with a baby in the NICU, life with an infant that has significant health concerns, and how to live life after they have passed on.  But mostly I hope its a place for people who need an extra helping of hope and love.

Not a minute goes by that I don't think of Aaron.  I miss him desperately and my arms ache to hold him again.  The tears come less often now but when they do come its always at the most random moments it seems.  Yet when those tears come my heart always swells with the joy of having had him here and of the love that we shared with him and that was shared with us by so many.  I think the tears are more gratitude now then they are of grief, at least that is what it seems to feel like.  I love you sweet angel of mine!