Wednesday, June 4, 2014

Fun Times with Blood Work (Not Really)

Once again, not sure this will  make a lot of sense, it's liable to be a rambling sort of post.  And long, too.  You've been warned...

School is out, and the madness has (sorta) slowed down.  But in addition to all the great things that have been happening, like the ones I detailed last time, there has been some worries and concerns for Aaron going on.  And maybe (probably) it's a good thing we had so much happening because it forced me to focus on something besides more "unknowns."  Those who've been following his facebook page have seen a bit of it.  But for my own unraveling of thoughts, and for the rest of you, here's the story:

The Thursday before Memorial Day, as I came home from carpool, his nurse mentioned that he'd had a bruise on his chest she hadn't seen.  The bus was here, and I tucked it away in the back of my mind to check it out.  (By the way, the back of my mind has so much junk in it, that it rivals one of those sitcom closets, probably not the best place to tuck thoughts.)  Yeah, it kinda got lost.

Thursday every one of our kids was performing in one of four different performances, starting at 10 in the morning and finishing about 9:30 that night.  And Friday morning, I had carpool again.  Needless to say, my nurses were happy to be dressing/undressing him.  And I was glad they were there to do it.  But I didn't see his chest wall.

Friday night about 6 p.m., I went to put his jammies on him. Yikes!  The thing was the size of a half-dollar!  And there was also a small lump just to the right of center that was palpable.  Great!  Office is closed and it's a holiday weekend.  Gotta love my brain.  I got thrown right back to when I was a new mom and Deborah had RSV.  I sat up all night, willing her to keep breathing, not thinking that there was a ped on call and an ER only a mile away.

This time, I forgot that the ped's office had night time hours, and Saturday morning hours, AND even though Monday was a holiday, they had an after hours staff in Monday morning as well.  Yeah, didn't realize that until Monday afternoon.

Anyway, bright and early Tuesday morning, we were at the office seeing a PA, because I wasn't patient enough to wait for a later appointment with the ped.  In the meantime, a few other bruises had shown up on his back and thighs, but nothing like the one on his chest.  The PA was also very concerned and actually went and got the ped to come look.  Can I say, the looks they gave each other, and the words that weren't said were not very comforting?

So off we went to get labs, and let me tell you, the six hours between the draw and the phone call were very loooooong hours.  But the labs came back mostly "okay."  Some of the values were a touch high, pointing to a possible vitamin deficiency, and his platelets were low, and lower than the comparison value drawn in April.  Okay, so watch, wait and repeat in one week.

Fast forward to this Monday.  There have been a few more bruises, but not a lot, so we repeat the labs.  This time, I also got a copy of last weeks labs printed out.  When I called for the results, the nurse was able to give me numbers, but not allowed to interpret them until the doctor wrote it up.  Most of them were the same: either normal or a touch high.  But not those platelets, those little things that cause you to clot when you're bleeding.  They're down, again, and in my opinion, by quite a bit.

Quick note:  normal platelets are 150,000-400,000 but usually written as 150-400.  April was 166, the first draw was 110, second was 85.

When I didn't get a call from the doctor, I called in about 8:30 to find out what was happening.  The after hours nurse told me I'd have to wait, but she didn't see anything concerning at all.  Now, I try to keep Mama Bear in check, but I was scared, and I was concerned.  And I had his labs in front of me.  So I told her I disagreed, and suggested that she do something to contact someone because I wanted answers.  She said she'd run them past the PA that was in and call me back.  Good!

Um, except my heart dropped a bit more when the phone rang ten minutes later and my son brought it to me saying it was Dr. K on the phone.  We went over his numbers, and he reassured me that the ugly stuff (think leukemia here, I know I was) was not on the radar.  While his platelets were low, his red blood cells and white blood cells were smack in the middle of normal.  So he was going go consult with rheumatology, but felt that the body might be just having a problem with the platelets, and the fix might be pretty simple.

Well, Tuesday morning, I was sitting in the temple waiting for the meeting to start and starting thinking that I wanted to get copies of all of Aaron's labs over the past while, just to see what trends were doing.  I love inspiration.  About that same time, Dr. K was doing that exact thing.  When he called me a couple of hours later, he had gone over every single lab for the past two years.  And yeah, we might have figured things out.  At least we think so.

Aaron has always been low.  In fact, his only "normal" platelet level was that one in April.  And he was even lower in August (blood infection) and in October (really bad bout with rhino).  And apparently, sometimes platelets struggle after a bug.  So we're going to watch for another two weeks, barring any really nasty bruises, repeat the labs again, and then have to make the decision about his surgery that's scheduled three weeks out.

'Cause ain't nobody wanting to do surgery on someone who doesn't want to clot off.  But he also does need it, like really needs it.  We'll be checking for some other particular nasty issues in his ears because right now, he gets ear infections every 4-6 weeks, almost like clockwork.  Plus he now has two cyst-like growths on his thoracic area, one just below his collarbone and the other on his sternum.  Yeah, better for him if they're in a jar and not in him.

With his teacher, Ms. K.

Last day of school.

So I've had a lot of ups and downs in my emotional arena over the past couple of weeks.  If he doesn't resolve, we'll add yet another specialist to his repertoire.  But I'm hoping he does.

Hanging with big brother, playing the guitar.
And what does Aaron think of all of this?  Well, he's being Aaron.  Having fun, hanging out, going places.  Yeah, pretty much life as usual as far as he thinks.  What a blessing this kid is.  He knows how to find joy in his journey.  So grateful he brings the rest of us along on his trip.

Being grateful in our circumstances is an act of faith in God.
Elder Dieter F. Uchtdorf

No comments:

Post a Comment