Monday, November 21, 2011


Honesty really is the best policy, right?  Well, let me be honest.

I am extremely disappointed and disheartened by our recent trip to Philadelphia for Jackson's second casting.  I have lost both my trust of the anesthesia team and my optimism about Jackson's treatment.  When we went to see Jackson in the PACU after his second Mehta cast was placed in the OR, we were told that--because his ET tube was not adequately secured with tape, he experienced a laryngospasm which required him to be "bagged" and given albuterol and decadron for breathing.  I would estimate that I spoke to 4 different people on the anesthesia team prior to his procedure about the "tape allergy" that they have recorded on Jackson's chart (I'm assuming this is why they failed to tape the ET properly).  His supposed "tape allergy" is a mild redness on his skin that goes away within hours.  Numerous times I told them to disregard it as an allergy, but obviously they did not.  In the end, fortunately, Jackson recovered fine from the anesthesia and does not seem to have any lasting effects from the episode.
I cannot say the same for myself.

Then, we were told the results from Jackson's first cast.  Well, sort of.  We were told half of the results.  Two months ago, PRIOR to Jackson's first cast, I was told by his doctor that Jackson's curve was 44 degrees and his RVAD (rib slant) was 27 degrees.  Then, on Friday, the SAME DOCTOR READING THE SAME XRAY, told me that these original numbers were a curve of 44 degrees and an RVAD of 51 degrees.  In my opinion, that is a huge discrepancy.  Currently, I am waiting on Jackson's care coordinator to get me the correct information.  But, naturally, due to the holiday there will be a significant delay in getting it.  The story of my life!  Jackson's new "measurements" are a curve of 40 degrees (4 degrees of correction) and an RVAD of 23 degrees (somewhere between 4 and 28 degrees of correction).  I have mixed feelings about that.  An RVAD correction of 28 degrees would be excellent progress; however, it also means that Jackson's scoliosis was worse than we originally thought.  An RVAD correction of 4 degrees is not very good progress.  A curve correction of 4 degrees is also not very good progress.  

So, in a nut shell.  The correction to Jackson's curve was essentially null and void.  The correction to Jackson's RVAD was either null and void or significant, meaning his scoliosis was worse than anticipated.  

But, in the spirit of Thanksgiving, I will try to briefly muster a bit of positivity.  Jackson's spine did show a potential to correct itself by moving slightly.  Many parents of casted kids I have spoken with on the support group have told me that throughout their journey they have had individual casts that were not very effective but others that were.  The 4 degrees that Jackson's spine did move were in the correct direction ... meaning his scoliosis did not continue to progress in the cast.  And, although is was incredibly small, Jackson's spine did make some progress (unlike his poor, sweet roommate who got 0 degrees of correction on both measurements).  

And, perhaps the biggest miracle of all, our poorly-wrapped Christmas present (green cast with red duct tape) is amazingly happy in his cast ... which is a good thing, because now we know that this is going to be a very long process.

1 comment:

Lauren said...

Hang in there! I think some progress is better than none... and maybe it was just because it was the first time... hoping and praying that the next cast will make a much bigger improvement. Love you girl... call me anytime!