Sunday, February 2, 2014

Annual cath and biopsy

On Thursday, Keegan was admitted for his heart transplant "annual", which includes a heart catheterization, angiogram, and biopsy followed by an echo, EKG, chest x-ray, and labs.  It's always a long and gut-wrenching day, no matter how well a child looks on the outside.  Keegan may not be in the best of health, but by all indications, we had no reason to think we would find anything wrong during his annual.  We have been in the transplant world long enough to know that looks don't mean squat.  Cath results are very telling, and biopsy is king.  Lest I scare you in that introduction, Keegan did get a good report this year.  His biopsy results came in with a 1R, which is a low-level and "acceptable" level of rejection with no treatment required at this time.

The day went much smoother than any other annual day we've ever had with Keegan.  He was scheduled as first case of the day.  We arrived at 7am with a Bug that was happy to be at his "big hospital" for the meantime, even though he was already asking to go to "[his] room on number 8".  Even though we know/assume that he begs to go to the cardiac inpatient floor because it's part of his routine (a sad statement in and of itself), it still is quite unnerving to hear, in case he's actually trying to tell us something.  He was quite chill in pre-op, was in the cath lab by 9:45am, and we were able to see him in the PACU by 10:55am.  They had to go in through his groin again in order to not mess with his central line at all.  Keegan's heart pressures were fairly stable from last year, and the team did not see any blockages or evidence of vasculopathy at this time.  Whew!

Then came 4 hours of trying to keep him (a) calm, (b) flat, and (c) leg straight for 4 very long hours.  The begging for the inpatient floor ramps up to a fury by the time he wakes up.  Anesthesia gave him some extra juice to help him sleep a little longer, and we ultimately had to give him some extra fentanyl and anti-nausea meds to work through it.

Trying to chill during the wait
We were thankful for a nurse that was willing to let him cheat a bit by lying on his side.

He started to get really antsy by three hours in and battled more nausea than he usually does post-anesthesia.  Then all of a sudden, he relaxed, ate a little bit, and said he was ready to go home, not the inpatient floor.  His chest x-ray, echo, and EKG were all stable.  Labs weren't too messy this week; nothing out of the ordinary, at least.  And finally, the biggest miracle of all?  We were discharged before rush hour traffic!!  For once in our lives, we were home before 5pm!  We were able to get Audrey back home and spend the evening together as a family.  Amazing and such a blessing!  Well deserved after 6 years and nearly 60 rounds of anesthesia!

Now if he had not broken out in hives later in the evening, it would have been a pretty great day, as far as heart transplant annuals are concerned.  Some benadryl, tylenol, and hydrocortisone helped ease his discomfort though, so that little hurdle was cleared.  We are hoping the hives are an anomaly, since he is already allergic to morphine.  An allergy to fentanyl would be a kick in the pants, surely.  

On Friday, we received the news that his biopsy results were 1R.  I thought that Keegan had a 1R result at least once before when he was younger, but I couldn't find that in a search of the blog.  It's not the most hoped for result of 0 rejection, but according to the team, a 1R isn't a far cry.  There is no treatment required for it.  As a mom, even a 1R can be hard to swallow, but we will take it and run for now.  

Overall, it was great to start 2014 off with a good assessment of where Keegan's health is, and to know that considering where he's been, we are sitting pretty.  Thank you for continuing to keep us in prayer.  Throw a few our way in regard to our insurance fight too, if you feel so inclined.  Luckily, Keegan has secondary Medicaid, but this riff with United is still a drain and important to beat for the long run.  Thank you again, friends.  Stay warm and safe out there!  More soon. 

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