Fragile

Today was not one of our best.  Nothing like starting your morning with an alarm clock at 6am so that you can get ready to go to the hospital for lab draws.  Owen was anxious all morning and about had a panic attack in the hallway outside of the lab.  Poor guy.  The lab techs were great and got all the blood they needed in one poke.  Owen calmed down when he realized it was nothing more than a quick poke and we were on our way.  There is still nothing tougher than snuggling your boy on your lap and telling him "yes buddy.. this does indeed stink.  It's not fair.  But we gotta do it!"

A sticker and a band aid seemed to be a cure all and he was happy as punch by the time the valet brought up out car. 

Owen took a mid morning nap and then we woke up and headed outside for another picnic in the grass.  We go outside to escape the germs of the common areas at the RMH, but all the kids flock to Owen even when we're outside.  We had several kiddos join us for our picnic, but they were nice enough to keep their distance.  Owen had some good laughs with the kids, so it was a fun afternoon.

There were rough spots in our day as well.. like Owen not walking at all because his legs are causing him so much pain.  I gave him a couple leg massages and that seemed to help, and by tonight, he had walked a little bit.  He needs some intensive therapy and rehab, but it will take time.  Tomorrow he has OT to work on some core strength. 

I got a call from cardio and Owen's Cyclosporine levels are really low.  The target levels are 300-350 and when we were discharged on Friday we were trending up at around 258.  Today they were down to 128... yikes.  The target levels help him to fight rejection, so having them low is not good.  We are increasing his dose starting tonight. 

Owen's 2nd biopsy is scheduled for Wednesday morning, followed by IVIG and Cytogam infusions.  It will be a long day.

When Owen was 1-3 months, he was an interstage single ventricle.  He was discharged from his first open heart surgery and had a 5mm shunt delivering all the blood flow to his body.  He was fragile and we just had to make it to the next surgery at 3 months! I had to weigh him, check his oxygen sats and HR, then email his NP daily with the data and tell her if anything was 'off'.  It was an intense monitoring program to help decrease the mortality rate in interstage babies.  I kept him in quarantine and healthy those three months.  It was intense. 

I feel like we are back to that fragile state, only five years later.  I am taking twice daily blood pressure readings, temp checks and watching his weight carefully.  If his temperature increases, if his weight suddenly increases/decreases, if he has lowered activity... pretty much any little thing can be a sign of rejection.  I feel like I am always on edge.  I am always sanitizing, washing hands and making sure he is comfortable.  I am sure he's annoyed with my constant.. "are you okay?  How are you feeling buddy?" 

I know it gets better with time, but these first few months post transplant are the most critical and I will be on edge for a while.  Not only that, but he still has the lack of energy he did when he was in heart failure.  He prefers to stay in bed and play Wii, won't walk much, and I keep reminding myself he's only 13 days post op.  He is healing.  I am a little on edge for the biopsy this week and am praying for another ZERO rejection and for his labs to level out at therapeutic levels.

It's 8:00 and Owen is already sound asleep.  I think I might just join him. :)