Monday, August 2, 2010


You may have seen my Twitter/FB post earlier today that we were worried about some troubling symptoms Keegan has been having lately.  Thank you so much for your prayers about it today.  They really mean so much more than we can say.  We take Keegan's vitals (blood pressure, heart rate, and temperature) twice a day, every day.  About two weeks ago, we noticed his heart rate was noticeably higher than it had been, even when he first woke up.  He also had some slightly elevated blood pressures.  As you can see from the pictures below, Keegan had a pretty busy weekend playing with family, so when he started showing signs of increased fatigue, we weren't immediately concerned. 

For the last month or so, we've been toying with the idea that Keegan might need to drop his nap.  I did not want to hear it at all because I still needed the quiet time.  Still, he was staying up later and later at night, and the pediatrician said that was a good indicator that he probably was in the process of giving up the nap.  Sunday however, he asked to take a nap at 11:00am, even though he'd slept in that morning.  He took a two hour nap and fell asleep that night as I was reading to him before bed.  This morning, he did not want to wake up after sleeping over 12 hours.  Both his occupational therapist and feeding therapist commented that they thought he didn't feel well.  His OT said he didn't have any "fight" in him today.  Then he fell asleep in the car at 10am on the way home, which is something he hadn't done since we drove home from Boston over a year ago.  We went to my mom's house, where he promptly asked to watch a cartoon and laid down on the floor with his blanket to watch.  He didn't touch a single toy.

I finally decided to call the transplant team.  They had me bring him to the pediatrician immediately.  Luckily, our pediatrician is best friends with our transplant cardiologist.  (Tell me that's not a God thing!!)  Of course, he perked up in her office, and she didn't think his heart sounded bad.  All this is to say, that despite everyone (yes, I guess me especially) getting worked up about it, we've just decided to wait it out a bit longer.  He again feel asleep immediately tonight although he didn't do much of anything at all this afternoon and was extraordinarly moody. 

It's quite possible that we're all overreacting, but frankly, it's hard not to do so.  The loss of our little friend, Hannah, last year made me realize that I can never underestimate anything related to Keegan.  Another friend who was transplanted over 10 years ago has been fighting rejection for the first time.  Here's the thing: this will never go away.  It could literally happen any minute of any day.  Keegan will never have "just a cold" or "just a bug".  Every symptom could be a glaring red flag, and I am so afraid I'll miss or ignore it until it's too late.  Sure this could all just be "normal toddler stuff", but what if it's not?  I'm tired of waiting for the bottom to fall out.  I push the worry aside way too many times a day.  And you know what?  I'm tired of it!  It's exhausting.  I'm sorry if this sounds like a pity party, and maybe it is.  I think I'm entitled to one every now and then.  Every day I wake up knowing that no matter what we do, no matter how many precautions we take, today might be all we have. 

Because Keegan's heart is denervated (the electrical system of his heart was severed when his old heart was taken out), he does not feel chest pain and would not feel the tell-tale signs of heart failure.  There wouldn't necessarily be any warning.  I've learned to live with it as best as I can.  I've learned to cherish every smile, every laugh, every tear, and every precious moment.  And today, just like every day, we're waiting.  Waiting for what?  I don't know.  I hope I leave this earth one day waiting on Keegan.  Nothing could make me happier.  But today and tomorrow, I'm waiting to see what will happen.  And frankly, it sucks.

Wait for the Lord.  Be strong, and take heart and wait for the Lord.
Psalm 27:14

1 comment:

Ben and Abby said...

Oh goodness, Maddie. I'm so sorry K is not feeling well. I pray that he starts to feel like his normal self soon. I can't imagine how worried and uncomfortable this makes you - how difficult it is to see him like this. Thinking of you - we are here if you need us. :)