Date night

So it's probably pretty obvious that there has been a disproportionate amount of stress to fun over the last 4 months.  Even one of Megatron's doctors has told us a couple times that having a medically complex child can be a marriage wrecker.  I can see that.  Determined not to let it happen to me and The Pilot, we've done our best to keep our sense of humor through all this.  We've tried to check in with each other often.  When I was in Pittsburgh though and he went back to work, it was hard.  I take that back, there are no words to describe how hard it was.  Even though we talked nearly every day during the 3 weeks apart, it's hard to stay connected when you are far apart and under a mountain of stress.

So to say we needed a date night is also an understatement.  We had the perfect opportunity last month..but the plans started back in December before we knew about the transplant.  Knowing we were about to go to one income, we weren't going to give gifts to each other for Christmas.  Then we heard one of our favorite bands, Arcade Fire, was going to be in town in April.  We took a risk and bought tickets as our gift to each other.  It was a risk because everything with Megatron was so uncertain. That concert was the very last thing on our minds starting December 31 when Megatron had his first hospitalization that started this madness.

After the transplant, I assumed we wouldn't be able to go to the show.  But after he was discharged to Ronald McDonald House, one of his nurses mentioned we would be home for Easter.  Forget Easter! That meant we'd be home for the concert!

We made it home and on the night of the show,  my mom came over, to hang with Megatron and The Pilot and I had a real date.  We even went to dinner.  Our army of supporters had given us a gift certificate to one of our favorite Japanese steakhouses.  It's a little pricey so we probably wouldn't have gone if not for Megatron's fan club.  It was soooo good!  And sooo nice to be out of the house and not rushing because there is a wiggly baby at the table with us.  We talked without interruption!  We held hands!  We pretended things were the way they were before Megatron.

After dinner we dropped off our leftovers at the house (trust me, you do not want your car smelling like Japanese steakhouse leftovers), kissed our sweet baby good night and headed for the show.

It was our lucky night!  We bought the cheapest seats possible, which was basically up in the rafters of the arena.  When we were making our way up, we were stopped by ushers at a table.  The show didn't sell out so they traded our tickets for tickets lower in the arena.  A lot lower.  We went from the 300 section to the 100 section and around the bowl until we were almost even with the stage.  Our view was amazing!

And so for a couple hours, we pretended we were younger than we are, that we didn't just survive the hardest 4 months of our lives and just rocked out. ❤️

4+5= tired and happy

The Pilot was home for several days so I was able to get out for a 4-miler on Monday...without my little sidekick.  Megatron does great in the run stroller but not having to push all the extra weight is nice.  I also got the chance to be reunited with the local rail trail.  It's close by but it's also flat, hardly ever crowded and there is nothing out there.  Miles of nothing.  And sometimes my brain needs that.

On Wednesday, I suited up and then waited.  Megatron and I played and worked on his physical therapy exercises until I started to see the signs.  The eye rubbing and yawning.  I grabbed that kiddo, plopped him in his car seat and were out the door with the run stroller.  Sure enough, about a tenth of a mile into the workout, he was out and I got to work.  I have a good 4 mile loop I can do from the house but I was aiming for five miles.  I ended up taking random streets in the neighborhood until I finally hit five.  It was the furthest I've gone since December and the furthest I've ever gone pushing the stroller.  I'm pretty stiff for sure but I'm so so glad I was able to get out again.  Plus, since I timed it with nap time, Megatron slept the entire time.  He woke up just as I was rolling him back into the garage.

 

I did a run/walk combo and boy do I have work to do.  My average pace was way over where I was last year.  I expected that but I also had the realization of just how much work I have to do.  I don't think it will quite be starting over like when I did my first half marathon 10 years ago but it won't be easy.  Hopefully my little buddy will continue to nap his way through my workouts! 

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.

Sweat!

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!

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. 

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?

A Different Kind of Race Report

I was really hoping that I'd be posting my Disney 1/2 marathon race report by now.  But I'm not because I didn't make it to Orlando.  I didn't get to race.  Instead I was sitting in a hospital classroom learning how to use a feeding tube and pump and how to care for a Broviac catheter when I was supposed to be on a plane to Orlando.  The last four weeks have taken a very scary turn and I am now in the midst of a different kind of marathon.  This is the abbreviated version (which is admittedly still quite long)...

On New Years Eve, which was also my last day of work, The Pilot was working so my mom and I went out to dinner with Megatron in tow.  During dinner he seemed a little warm so when I got home I checked his temp.  100 under the arm.  Not that high in a baby without liver disease but any fever is bad news for Megatron.  I called the pediatrician.  Who called the GI doctor.  Who said to go to the emergency department at Children's Hospital.  And that turned into a month long ordeal.

 Awwww man....

He was admitted for 4 days and sent home on oral antibiotics for an unknown virus.  Two days after discharge, at a follow up with the pediatrician, the fever returned but this time his belly was really distended.  Another call to the GI doctor and another order to go to the ED.  That led to 5 more days in the hospital with fluid in his abdomen (ascites), which then got infected.  Megatron went under general anesthesia for the 3rd time.  This time they placed a Broviac catheter.  While scary, it is a good thing.  The catheter can be used to administer medications as well as draw blood from.  And since Megatron has a lot of lab work done, this means less sweat and tears from me, The Pilot and Megatron, because they don't have to poke him so much.  They discharged Megatron and ordered 21 days of IV antibiotics, which The Pilot and I were to administer 3 times a day via the Broviac.  He was also sent home with a feeding tube (NG tube).  Even though he eats like a champ, his gimpy liver doesn't absorb vitamins and his nutrition and vitamin levels had tanked.  The feeding tube is used for 10 hours overnight with a high calorie formula that is already broken down so he can absorb what he needs to more easily.

We went home and things seemed to settle down.  I was thanking my lucky stars I wasn't working as we tried to adjust to the new 3-times a day IV antibiotic schedule as well as the nighttime tube feeds.  Just as it felt like we got the hang of it, everything changed.  A week after the last discharge, my in-laws were watching Megatron while I was helping my mom unpack (Yes, let's throw in more stress with a move) and The Pilot was at work.  Mid-morning they called to tell me that Megatron threw up and there was some black specks in it.  A call to the pediatrician's office and then to the GI specialist and everyone agreed we should sit tight.  Backing up a little, about 6 weeks ago, the GI doctor warned us that esophogeal bleeding was a common complication of biliary atresia, and can be very difficult to stop.  Any sign of blood in vomit or a diaper warrants a 911 call.  Based on what my in-laws described, it wasn't bright red, indicating it was old blood.  A couple hours later though, he vomited again.  I was already on my way home and en route was able to have the GI doctor paged.  By the time I got home, the doctor called to tell us to call an ambulance to get him down to Children's.  Sigh.  So we added "first ambulance ride" to not just Megatron's baby book but mine also.

He was admitted to the PICU for observation while they used medicine to stop any other bleeding that may have still been active.  Throughout this, his lab work started to look worse.  His liver function was looking worse, he was losing weight and he turned a horrible shade of yellow.  It was heartbreaking to watch my sweet, somewhat healthy, baby deteriorate like that.  It was time to speed up the transplant evaluation process.

 On Monday, January 20, Megatron and I added another first to our baby books.  We were flown in a helicopter from Columbus to Pittsburgh.  While Megatron was stable, they wanted to get him to Pittsburgh sooner rather than later.  He was getting a little better but was still pretty sick.  We spent the next 5 days learning more than any parent should ever have to learn about liver transplants.  Megatron had more firsts:  an EKG, chest x-ray, CT scan and an echo-cardiogram as well as an abdominal ultrasound (which he's a pro at by now.  I've lost track of how many he has had.)  Megatron continued to improve while The Pilot and I were put through the ringer.  We met with social workers, finance people, a transplant psychologist, transplant surgeons, heptalogists (liver specialist), a transplant nurse and a transplant coordinator.  Not only was Megatron being evaluated but we were as well.  They wanted to make sure we were competent enough to take care of Megatron post-translant.

I guess we fooled them because on Friday, January 24, Megatron was added to the liver transplant list.  He isn't at the bottom but he isn't in the critical category.  He's hanging out roughly in the middle unless his health status changes.  So now we are in the biggest wait of our lives.  Every time the phone rings, I nearly jump out of my skin because any call could be "the call."  Once a donor is available, we will get a call to hit the road to get to Pittsburgh.  We now have "transplant suitcases" packed and ready.  We have been trying to make arrangements for our cats and our house to be taken care of in our absence.  The Pilot has been working with his employer to figure out how to work, yet be able to take time off without much notice.  The logistics are already making my head spin.  I will stay in Pittsburgh with Megatron for 6-8 weeks once his new liver is found.  How do you prepare to be away from home for that long...without any notice?  I have no idea.  I suppose that part will work itself out.

So this marathon....  It's a race to hurry up and wait.  I'm trapped in mile 26 and I have to keep crawling through it over and over.  I want so badly for the race to be over but that isn't an option.  I just have to desperately try to put one foot in front of the other.  People say they don't know how I do it or that they are amazed at my strength.  I appreciate the kind words but really, what choice do I have?  There is no option other than to take care of this baby in the best way that I know how.  And when I don't know how, there is an army of medical professionals as well as loved ones to step in to help.

So how's that for a report?  Certainly not the one I wanted to write.  My BFF still went and did the Disney 1/2 marathon.  She bought me a bracelet that says "Be Brave" on it and she carried it during the race and sent it to me after.  We are considering it a relay.  It's looking like 2014 won't be my year to race on the roads.  Instead me and my family are in a race to find this sweet boy a new liver.

Even baby hospital gowns are a little breezy on the backside!

Update:  I wrote this last Thursday and on Friday morning, that last hospitalization with the GI bleed replayed just like Groundhog Day, which is today coincidentally.  On Friday morning, Megatron had blood in his feeding tube, indicating yet another GI bleed.  Another call to 911, another ambulance ride to Children's and we are back in the hospital as I type.  Hopefully an helicopter ride to Pittsburgh isn't involved this time around and they can patch him up again so we can go home to wait.  At least we got a trial run with our already packed "transplant suitcases."  Both The Pilot and I got to make sure we have the essentials packed (I almost did with the exception of a toothbrush, which my mom brought to me) so that when it's really "go" time, we are ready.