Saturday, April 26, 2014

A funny thing

A funny thing happened last week.  I had to have my annual lab work done (my physical was in February but we dropped everything for Megatron's transplant so I was just getting to the lab work).  This May be TMI but there's a point to this.  I've always been somewhat of a hard stick.  Sometimes they find the vein but then it won't actually bleed.  I've noticed this similar trend with my sweet Megatron also.

So I go in for my lab work planning to knock it out and get on with my day.  They poked me once but sure enough, it wouldn't bleed.  They got someone else who poked me again, this time in the hand.  They seemed to forget there was a person on the other end of that hand.  They were "digging" around trying to find the vein that they swore was there a second ago.  It hurt.  A lot.  And for some reason in that moment it hit me like a truck just what Megatron goes through all the time.

I was holding back tears.  This was the first lab work I've had drawn since about a week after Megatron was born.  So while I've been present for 99% of every poke Megatron has every received (which is probably pushing 75), I had forgotten just how uncomfortable it can be at times.  Sometimes it downright hurts.  And in that moment, it broke my heart that my baby has to go through that.  It's primal really.  As a mom, you want to protect your baby from pain, but in my situation, I can't.  I'm often the one holding his arm down so he doesn't squirm. 

I kept it together long enough to get my band aid and run out the door.  And then shed a few tears in my car.  And again at home when I told The Pilot what had happened.  It seems like such a small thing considering Megatron has literally been cut open from one side of his belly to the other.  He's had an entire organ replace for goodness sake!  Suddenly though, I could put myself in Megatron's baby socks (I haven't fallen for the baby shoe trap yet) and my heart ached for him.

I'm sure this won't be the first time something like this will happen.  I'm sure my heart will break for him over and over for things that aren't typical (surgeries, transplant issues, etc.) but also for things that are more normal (his first skinned knee, his first broken heart).  I doubt that will ever get easier.  For now though, I do take comfort in one thing.  Seventy-five percent of the time, sweet Megatron hardly fusses at all when getting poked.  In the past 7 days alone he's had three pokes and he only cried for one.  Even then, as soon as they loosened the tourniquet, he stopped crying and tried playing with the tubing that was drawing his blood.  I am so thankful that this kid is so easy going so far.  Despite all he's been through, he just seems to go with the flow.  I have so much to learn from this kid.

Saturday, April 19, 2014


I got to sweat today!  And for a change, it wasn't because I holding down my screaming baby for a medical procedure.  I worked out!  After having to take a break during Megatron's struggles, I've been very anxious to get back out there.  My pants were looking forward to it too!  Four months of hospital food didn't do me any favors getting rid of the baby weight that's for sure.

Today I dragged Megatron out to the trail to meet my training group.  I was loving the sunshine, the outdoors, the friendly faces, the smell of sweat, EVERYTHING, while Megatron sat in his stroller giving everyone the stink eye.  Luckily he fell asleep once we started cruising so he wasn't glaring at me for the entire workout.

For 45 minutes I waddled, walked and ran.  It wasn't as hard as I thought it would be but I have a lot of work to do to even get back to where I was in December.  Hopefully the weather is kind and Megatron's health continues to improve so I can start working out even when The Pilot is working so I can bring Megatron along.  I'm hoping he learns to love the BOB!  Right now he's still in his car seat attached to the stroller because he isn't yet sitting up on his own and I don't think he has enough body control to sit in the seat of the stroller.  We both have work to do!

Thursday, April 17, 2014

35 In, 35 Out

My last post was a bit intense so here is a more lighthearted one.  While I'm about a month late posting, I did manage to take the picture on time.  It was a challenge since I was on my own at Ronald McDonald House.  I stacked up boxes as a makeshift tripod and then attempted to get Megatron to look at the camera even though no one was standing there.  Yeah.... 

Anyways, Megatron has officially been on the outside longer than he was on the inside.  As hard as it was at times to be pregnant, I think it was sure easier than the 35 weeks that followed!  I'm certainly thankful we made it though!  I don't even remember being "that" pregnant!  So much has happened. 

Saturday, April 5, 2014

Another Marathon Report

I cannot believe its been 2 months since my last post.  It feels like I blinked and 2 months passed yet at the same time, I feel like I've been through a war in that time.  I've wanted to start this post for awhile but I just couldn't.  I'm not home from war yet so the wounds are still fresh.  I'm also still in survival mode so finding time to write has been difficult as well.

In my last post I mentioned that Megatron was added to the liver transplant list on January 24.  I can't even recall the order of events after that but there was a short time at home but then we ended up back in the hospital with Megatron.  His liver was failing and fast.  His health was starting to decline rapidly.  He was running out of time waiting for a deceased liver donor.

Somewhat quietly in the background though, a gift was in the works.  The Pilot's cousin drove from Indiana to Pennsylvania to be evaluated as a possible candidate for living donation.  He was a match.  While living donation is considered a last resort since it puts two people at risk, Megatron was out of time.  It was worth the risk and The Pilot's cousin was all in (I think I'll start calling him The Cousin. hehe).  Within a week of learning he was a match, surgery was scheduled and there was a plan to head to Pittsburgh.  It left us with a couple days to wrap things up at home and take care of as many loose ends as possible.

Never one to follow a plan though, Megatron started to have some labored breathing (due to fluid in his body but also because his GI track was so swollen, it was crowding his lungs).  Long story short, rather than taking a leisurely car ride to Pittsburgh on a Monday afternoon, Megatron and I got the VIP treatment again and on a Saturday morning(February 22) took another helicopter ride (The poor Pilot got the short straw again and had to drive).

Two days before the transplant.

Surgery was scheduled for Wednesday, February 26.  The wait from Saturday to Wednesday was excruciating.  Both Megatron and The Cousin both needed to be as healthy as possible for the surgery to still be on.  Finally though, it was official.  I can't even begin to explain what the night before felt like.  Lots of tears were shed after Megatron was asleep (though he didn't sleep much that night due to the unfortunate timing of cutting his first tooth).  I've always been an anxious person but this was a whole new level of anxiety.  Mentally you don't even want to let your mind wander to the worst case scenarios but at the same time, since his diagnosis, we have learned to hope for the best but try to prepare for the worst.  Especially since so often, Megatron has gotten the "worst" of the possible complications from biliary atresia.

Early in the morning on Wednesday, February 26, in a hospital a couple miles away, The Cousin's surgery began.  Knowing how scared we felt, I can imagine the emotions were running high for him and his family.  A couple hours after The Cousin's surgery began, Megatron was taken back. Leaving him with anesthesia for the fifth time was excruciating.  Especially since this time we knew it could be 12+ hours since we would see him again.  We kept in touch with The Cousin's wife all day via text message as well as through a nurse liaison who was bringing us updates from the OR. We received updates from the nurse about every hour.
  • They are dissecting the old liver from Megatron's body.  He's doing well.
  • The Cousin's liver looks good!  A portion of the left lobe is en route to the Children's Hospital.
  • The liver has arrived.
  • The Cousin is doing well.
  • The liver is in and starting to profuse.  He's doing well.
  • They are done with the surgery and doing a final ultrasound to verify all the connections are good.
  • He's being taken to the PICU and you can see him within the hour.
It ended up being a roughly 8 hour surgery.  The Pilot, his dad, me and my mom sat in the surgical waiting room for over 8 hours.  Honestly, it was easier than I thought.  I think because the surgery he had when he was 7 weeks old took so much longer than expected, I had mentally prepared myself for the transplant to take longer than they estimated.  I was prepared to sit there for 12 hours so when it was 8, it was a relief. Strange as that may sound.  Nothing like being relieved that your 7 month old baby was only in surgery for 8 hours instead of 12.

Morning after surgery

The first night after surgery was awful.  Looking back though, I realize what I fighter we have.  Megatron was fighting through the sedation.  As the anesthesia wore off, they were giving him meds to keep him sedated since he was intubated.  They weren't working though.  He was thrashing around.   They gave him more meds but finally, he was maxed out.  The nurse (an average sized male) said he'd given Megatron enough medication that would have knocked him (the nurse) out for at least a couple hours.  Seeing my baby thrash around like that after major abdominal surgery has heartbreaking.   Finally, since he was at risk of pulling out IVs, his breathing tube or even his stitches, they had to give him another medication that essentially paralyzed him.  The good part of all this though?  His body was metabolizing medications fast.  Really fast.  The reason?  His new "big boy" liver was working.  Really really well.  Again, it sounds strange but while it was heartbreaking to watch, we knew that it was actually a good sign.

My sweet boy was still in there under all the sedation!

I could write a novel on everything that happened since but the Clif's Notes version is:
  • He spent five days in the PICU.  He was off the breathing tube less than 48 hours after surgery.
  • The next morning, he had an ultrasound.  He's had dozens but this was different.  As I watched on the screen, I realized I was looking at The Cousin's liver in my baby.  He had saved Megatron's life!
  • Within 24 hours of surgery, Megatron's sickly, yellow coloring was starting to fade.  Within 48 hours of surgery, his eyes were white.  I cried the first time I saw them white.  I've never seen them that color.
  • Within a week of surgery, he was smiling.  At everything.  Instead of working to get a random smile out of him, he was smiling at the walls.  At the nurses and doctors.  At the couch. At his IV pumps.  I'm not kidding.  It also hit me like a ton of bricks that he must have been miserable before the surgery.  He had been silent (no coos since Christmas) and didn't smile all that much.  He has never been what some would consider a cranky baby by any means but he certainly wasn't a ball of giggles either.
  • He spent just 14 days total in the hospital after surgery.  Two weeks post surgery, he already showed completely normal liver function. 
Discharge day!
  • About 10 days post-transplant, The Pilot had to go back home and go back to work.  He needed to work to keep up with the insurance premiums to pay for this adventure.  Just add that to the list of heartbreaking moments.  He didn't want to leave us and I didn't want him to leave.
  • After discharge from the hospital, we were released to Ronald McDonald House, expecting at least another month in Pittsburgh.
  • After 2 weeks out of the hospital, Megatron tested positive for EBV, a very common virus.  Not a big deal but in a baby who is now immunosuppressed, it can be harder to get rid of.  
  • He had low grade fevers for a week (fever can be a sign of rejection) but since there were no other symptoms, they decided to keep him out patient and see what happens.
  • We had a brief 3 day hospital stay when his fever climbed and he started to act like he did before the transplant (no wiggling or cooing, no smiles, just staring).  Some IV antibiotics and a unit of blood perked him up and was enough to send us on our way back to Ronald McDonald House.
  • During that hospital admission, the Pilot was able to come for a visit!  After 21 days of work, dealing with a cold and more work, he came back to us!  He was around for Megatron to get discharged so for the first time since the end of February, The Pilot got to see Megatron outside of a hospital!
So that's what's been going on since my last post.  Heavy stuff, right?