Thursday, February 26, 2015

One Year S/P

In the medical world, s/p means status post.  For awhile, Megatron's diagnoses was biliary atresia status post kasai procedure.  Now, it is biliary atresia s/p liver transplant.  And today, we are one year s/p liver transplant.  I can't even believe it.

Starting on February 26, 2014, our world started to have glimmers of hope.  Everything prior to that was by far the worst, most painful and scariest time I have ever experienced.  But because of the selfless act of one person, it all turned around.  Liver disease was trying to steal my then 7 month old baby from me but in an act that I wasn't capable of, The Pilot's cousin saved Megatron's life by donating a portion of his liver.  A "beautiful" piece of his liver according to one of Megatron's surgeons. A liver that for the last 365 days has worked hard to remove all of the toxins that had built up because of Megatron's faulty native liver.  A liver that has kept working despite Megatron's body trying to reject it last summer.  A liver that has given Megatron the opportunity to grow into a normal, thriving, ornery toddler.

I am even more overwhelmed now by The Cousin's gift than I was when we first heard he was getting evaluated and then found he was a match.  I think the reason for that is before transplant, we lived hour by hour.  There was no time to sit and reflect or process what was happening.  It was happening too quickly.  We went from having a relatively healthy baby at Christmas to being added to the national liver transplant list one month later and then a month after that, having a liver transplant.  Plus, when we were in the thick of it all, we couldn't/wouldn't see how bad it was.  It wasn't until months later that I went back and looked at the photos did I see just how bad it was. Megatron was dying.  It sort of felt dramatic to think/say that back then, but it was true.  At 7 months old, Elias was only about 12 pounds and nearly a pound of that was fluid and blood that wasn't circulating.  You could see every bone in his body as his skin just hung from him.  Yet his abdomen was terribly distended and was tight and hard.

Two days before and bones
Two days before transplant with a distended belly.

Then The Cousin reached out and said he was going to Pittsburgh to be evaluated to be a donor.  We were in shock.  But also still in and out of the hospital so we couldn't even think straight let alone think about it being a real possibility.  Then, a few days later it was confirmed he was a match and surgery was scheduled.  It happened so quickly.  And we are thankful it did.  Megatron was out of time. 

Even when transplant day arrived, it was like time stopped yet was on fast forward at the same time.  I remember not wanting to let go of Megatron that morning.  I wanted to hold him forever.  But I knew he needed a new liver and he needed it fast.  So I handed him over to a team of surgeons and nurses.  Somehow I had managed to mentally prepare myself for the wait.  We knew it could potentially take up to 12 hours for the surgery so I planted myself in the waiting room and waited.  What I didn't prepare myself for was after transplant.  I had not one thought of what would happen after I walked out of that waiting room.  I didn't dare allow myself to think of anything after the surgery.  There was too much of a risk for it to not work.

The morning after his transplant.  He looks scary and beautiful to me.  Because despite all the tubes and wires and the giant incision, he is pale, pink and no longer distended.
That shriveled up green thing on top is Megatron's native liver, compared to a healthy child's liver on the bottom.  He's a miracle and a fighter by every definition. He survived with that thing in him. And was strong enough to survive transplant.  I look at that and my heart aches for what he went through.  My heart aches that more people aren't registered organ donors.  My heart aches that The Cousin was so selfless that he risked his own life for my child.  But as the pathologist who showed us Megatron's old liver said, that liver is no longer in my child.  We can say goodbye to that bad liver and move on. 

I think as a parent, its natural to dream of your child's future.  What are they going to be like as their personality develops?  What will they look like?  What will they be when they grow up?  I stopped thinking about those things in January 2014.  I stopped stocking up on the next size clothing.  I stopped stocking up on diapers when they went on sale.  I couldn't.  It wasn't that I didn't have hope.  I had tons of hope!  The thing was, we were aware enough of what was happening and the statistics, that there was a very real chance that this would not end as we had hoped. I think going through that experience has changed me.  How could it not?  I think a small part of my brain will always be traumatized.  I think a bigger piece of my heart will always be broken.  I think my heart will always start racing and my stomach will be in my throat when I hear the beeping of an IV pump or a feeding pump.  Or a helicopter flying low.  Or an ambulance racing by.  Or the lullabies that one of Megatron's toys plays because we played them for hours upon hours in the hospital before and after transplant.

Smiles!  Two weeks post-transplant and getting discharged from the hospital!
But despite all of that, my heart is so full.  I'm finally starting to catch myself wondering what Megatron will be like in a year or when he gets to kindergarten.  Will he like school and books like his parents?  Will his hair get darker?  Random things like that.  I also feel I had a huge milestone (breakthrough maybe?).  I bought Megatron a pair of shoes from a buy/sell group on Facebook.  They are brand new and were a great price.  They were also a size 8.  Megatron is barely in a size 4 right now.  It seems like such a silly thing but for the first time in over a year, I've allowed myself to envision Megatron growing up.  I can see past the current hour.
11 months post transplant. Silly, sweet boy.
We've had a lot of ups and downs this year but none of it was as traumatic as the two months before transplant.  Yes, his abdominal closure surgery in October was horribly painful for all of us, the vomiting that lasted for 9 weeks in the fall nearly sent me over the edge and the feeding tube in December seemed like a big setback.  But none of it was life threatening.  They were bumps in the road compared to pre-transplant life.  Our perspective on life has changed dramatically this year.  We celebrate small and unconventional milestones around here (Hello learning to sit and crawl without ab muscles!  And heck yeah for having the NG tube removed!  Reducing and discontinuing medications?  Party worthy! Going up a size in diapers after NINE months in the same size?  Write that down in the baby book!) and very rarely take for granted normal and/or silly milestones.  Megatron went splashing in the cat's water bowl again?  I discipline first and then quietly snicker and smile because he CAN get into trouble.

Megatron is here to do all the ornery things that little boys are supposed to do.  And even on the hardest days (and anyone with a toddler knows, there are some hard days!), not a day goes by that I don't think about The Cousin and what he did for our family.  Every single day I think of his selflessness.  It makes me thankful that my Megatron is here to be ornery.  It makes me try hard every day to take care of Megatron to the best of my ability.  It makes me try hard to be a good person and set a good example for Megatron.  Because how else can you thank a person for giving a part of their body to save the life of your child?  There never are enough words to express that gratitude (though I don't think I'll ever stop trying).  But there are my actions.  I will take care of Megatron and his new-to-him liver.  I will teach Megatron as he grows up how to take care of himself and respect the gift he was given.  And each year we will celebrate his liver day!  And celebrate The Cousin's amazing gift. And each year on his liver day, we will tell Megatron his amazing story.

Tuesday, February 17, 2015

SAHM Stereotype?

I'm a stay at home mom now, so aren't I supposed to troll around on Pinterest all day?  Horrible stereotype right there!  To be honest, most of my pinning took place while I was pregnant and had no energy.  So I pinned crap and then never did any of it because I was so tired from being pregnant, then had Megatron premature and then there was that whole liver failure ordeal.  But now that things aren't so life and death, I've been acting on my pins.

It started innocently enough with a couple recipes.  Some were winners, some were complete failures. Then I moved on to toddler activities.

Paper towel tubes taped to a door so Megatron can drop pom poms down the chute.  Of course then I got paranoid that I'd have to explain to his GI doctor that "yes, I know you saved his life and then I let him swallow a cotton pom pom" so we don't play with this very often and really its only good for about 5 minutes of entertaining at a time.

Then I busted out the power tools.  Megatron is the proud owner of a busy board.  This took me a couple weeks.  It started with a piece of plywood that I used my 7th grade shop class teachings to spray paint...our garage floor has a yellow tint to it now. 

Then it was a trip to Habitat for Humanity's ReStore to buy some various hardware.  Megatron loves thermostats.  I have no idea why but he can find one anywhere we go and will point and grunt until you pick him up and show him.  So yes, his busy board has a thermostat.  He also loves a good light switch! There is also a hinge, a springy door stop, a wheel and some slide locks.  And to make it slightly more educational, house numbers to practice counting to four.

Mom, this light switch doesn't DO anything.
But this door stopper makes a funny sound!

So serious.
My very own thermostat!
Playing...or working on his squats?
The busy board was a hit and worth the time, effort and money.  He randomly plays with it still and I think he may continue to do so.  He hasn't quite figured out the slide locks so I hope we still get some play out of it before we pass it along to someone else to enjoy.

My next project is in the works and involves repurposing some decorations from our wedding as well as some kitchen cabinet doors from before we remodeled our kitchen. 

So that's the extent of my Pinterest projects.  It's only taken a year of "unemployment." Hehe.

Monday, February 9, 2015

Blood boiling

So this whole measles outbreak makes my blood boil.  Normally when science and politics meet, I check out.  Usually it doesn't effect me and/or I believe it will all work out.  But measles? People who choose not to vaccinate their children?  My blood is boiling and here is why.  90% of unvaccinated people will get measles if they come into contact with it.  Children under the age of 1, those who are allergic to an ingredient in the MMR vaccine and those who have a compromised immune system cannot receive the vaccine and rely on herd immunity to protect them.  And this group of people are those who are more likely to not just get these viruses  but face very serious complications from them, even death.

Well guess what?  I have an immunosuppressed child.  He can never receive the MMR vaccine (or varicella or any other live virus vaccines).  Megatron is completely exposed to these highly contagious viruses.  And as a parent, the thought that other parents choose not to protect their own children, therefore exposing my child, breaks my heart.  It makes me angry because I have spent the past 18 months doing everything in my power to keep this child alive.  And for him to have survived liver disease only to be put as risk for a virus that was nearly eradicated from the western world makes my blood boil.  I don't care if I have friends who choose not to vaccinate or if they feel like everyone has the right to choose what they do with their bodies.  I absolutely agree that we should question everything we put into our bodies and shouldn't blindly follow what big politics/big pharmaceuticals tell us what is safe.  However, there is overwhelming evidence that show vaccines are safe. Evidence from multiple sources from all over the world, not just from the pharmaceutical companies.  They do no cause autism.  Yes, there are isolated cases of terrible, terrible reactions from vaccines.  And to those who have suffered from something like that, my heart breaks for you as well.  But overall, it is my belief that vaccines are safe.

You have to prove your pets have all their immunizations before you can take them to a kennel.  Many schools are either nut-free or have nut-free areas in the cafeteria.  Both scenarios that I whole heartedly agree with for what its worth.  We hold pets to a higher standard of health care?? If your kid can't bring a peanut butter and jelly sandwich to school, then they shouldn't be able to bring a highly contagious, yet highly preventable disease.

Here's where it gets tricky for me.  Megatron could be a carrier of the measles (as anyone who is not immune).  And we wouldn't know it for days, potentially weeks.  So yes, when he starts to attend school, he could potentially bring it to school.  So the line is blurry there.  Obviously I think schools should require immunizations for all students who can safely be vaccinated.  If you don't want your child vaccinated, then you need to find an alternative method of education.   If every other kid was immunized, then Megatron's risk of exposure would drop drastically.

And once Megatron is in school?  Say someone in the building does come down with measles (or mumps or chicken pox).  Megatron would have to leave school for the entire incubation period to make sure that there are no other cases and that he is not infected. This happened in a school district nearby.  All unvaccinated children had to stay home for 28 days after one child was diagnosed with mumps.  So Megatron and kids like him have to suffer because of someone else's choice.  It just doesn't seem right.

I hate that this has come to be an issue again.  Now, of all times!  I have an immunosuppressed child for whom I would do anything to protect. These diseases were eradicated and were brought back because of one doctor who lied in a report and started this insane anti-vax movement.  These people brought them back and they now put immunosuppressed people unnecessarily at risk.  And that makes my blood boil and my heart break at the same time.

I didn't provide any sources for my facts in here because only about 20 people read my blog and they are either pro-vaccine already and know this information to be true or are anti-vax and probably wouldn't click on any links anyways and will probably stop following my blog.  Hopefully this post will make them stop and rethink their stance and cause them to do their own (legit and science backed) research.

End soap box rant.

Monday, February 2, 2015

2,015 in 2015

If all my friends jumped off a bridge, I might also.  Not really.  Well, maybe.  On New Year's Eve, this 2,015 miles in 2015 Challenge started popping up on my Facebook feed.  The challenge was to run or walk 2,015 miles in 2015.  You could do it on your own or with a team.  Sounded intriguing and a way to keep motivated even when I'm not training for a race.  And with Megatron in the mix, its just harder to race as often as I did before. 

So at least a dozen or so friends were all up the the challenge so we broke off into smaller teams.  I am on a team with two other lovely ladies and we each plan to cover at least 672 miles.  I've never tracked my mileage before.  I make training schedules for races, stick to it and that's it.  Everything else is just for fun.  It's funny that I've been doing this for 10 years and have never once tracked my mileage.  Anyways, its roughly 2 miles a day.  And certainly I can reach that given that most of my workouts are 4 miles or more, right?? Yeeeah.

We are one month in and I'm realizing this is definitely a challenge! Haha.  Some weeks are tricky because I'm on my own a lot with Megatron and now that there is snow on the ground, I can't get outside with him in the stroller.  I've put in quite a few treadmill miles recently.  And I HATE the treadmill.  And some weeks, like last week, Megatron had three medical appointments in three days.  And for some reason, they are exhausting for both of us so by the time he goes to bed for the night, the last thing I want to do is get on the treadmill.

But, I made a commitment to my team so it will happen!  My total mileage for January was 54 miles.  And given that The Pilot was away for about 25 of the 31 days in January, I was happy with those 54 miles, even though I fell 2 miles short of my monthly goal.  I'm not too worried since I'm training for a May half marathon and my mileage will start going up weekly starting this week.

My coach is a bit of a slacker but he's also very tolerant.  He napped through a very chilly 5 miler recently.  I'm so glad I invested in the weather shield for the BOB because it keeps the wind off and when he's bundled up, it's nice and toasty in there. Give him a sippy with his hypoallergenic formula and a snack up with allergen free "cheerios" and he's a happy boy.

Sleepy Megatron

I feel a tad bad for having such a good laugh at Megatron's expense but watching him fall asleep while in his high chair might just make up for all that liver failure drama he put us through.

After I took his lunch plate away, he just tipped his head back and was out.  Even was snoring a little!  Had a fit when I cleaned the lunch off his face but within about a second of laying him in his crib, he was sound asleep again.

And then there was this day...both lunch and dinner were a struggle.  He plays hard and then crashes!

Saturday, January 3, 2015

A Year At "Home"

I wrote this post for our family blog but with so many year end recaps floating around, I thought I would share here what our year looked like.  It wasn't a year of juggling work, a baby and training.  It was a year of survival, of learning to administer IV meds and tube feedings at home and hoping for a new liver for our baby.

One year ago (on Decemeber 31), I left my job with every intention of finding something with a more flexible schedule.  We also knew something might be up with Megatron when I gave my notice because his spleen continued to swell. Within hours of leaving my office for the last time, Megatron was was admitted to the hospital.  And that kicked off the year of the hardest job I've ever had: "stay at home mom to a medically complex baby."  So much happened early in the year that I hardly remember the details.  It was a couple days in the hospital, a couple days out, then back in.  It felt like this happened over and over and over forever but it was really "only" about two months.  It wasn't until I went back through my 2014 planner to transfer dates into my 2015 planner that I was able to grasp just how much we went through this year...and this was just for Megatron.

We drove over 5000 miles for treatment.

We attended at least 89 medical appointments/procedures.

We spent 50+ days in the hospital.

We dealt with nine weeks of 3-5 times daily vomit.

We spent a total of eight weeks in Pittsburgh.

There were two calls to 911 and two ambulance rides.

Don't forget the two helicopter rides.

There were two major surgeries.

Most importantly though? One new liver.

I didn't earn an income and yes, that was hard not just on the bank account but it was also emotionally hard.  I never wanted to be a stay at home mom.  But that's how it worked out and I'm so thankful it did.  Can you imagine trying to manage everything above while also working?! Ha!

Our sweet boy, despite the recent challenges, is thriving.  We've been able to devote our attention to not just his health and healing from two surgeries but also to making sure he caught up/stayed on track developmentally. You would never know he spent 50+ days laying on his back in a hospital crib, either too sick or healing from surgery, to do the much needed tummy time.  You would never know he was cut open from limb to limb...twice...because we worked hard in physical therapy to teach him to overcome weakness, underdeveloped neck and back muscles, and abdominal muscles that were severed.   You would never know any of it by looking at him.

I'm sure the last 17 months aged the rest of us by a decade and it shows on our faces but it was worth it.  The drained bank account was worth it.  It was worth it because now we, and the rest of the world, will have the joy of getting to know this sweet boy.

I have no expectations for 2015.  Whatever the year throws at us, we will just keep taking steps forward.  Even if we take some backwards steps from time to time, the goal is cumulative steps forward.

Sunday, December 28, 2014

The Fun Never Stops!

The blog fell off my radar obviously.  I've been overwhelmed at where to start since so much time has passed and so much has been going on.   After Megatron's surgery at the beginning of October, things have been challenging.  The surgery itself went well, but the days that followed were hard.  Really hard.  It was a very painful recovery for our sweet boy.  Just like after his transplant, it took a lot of medication to keep him comfortable.  But even with narcotics and an epidural, it was really painful for him but also painful for my husband and I because there wasn't anything we could do. 
The afternoon after surgery....couldn't get comfortable.  He was also trying to pull out his IV and NG tube which is why his elbow was restrained.

He was more comfortable sitting up...with some help from The Pilot.  Megatron fell asleep like this!

After several days of him only wanting The Pilot, I finally got some baby cuddles.
Once we all survived several painful days though, he healed well from the surgery itself. It did take him a few days to regain his appetite and when he started eating after the surgery, he started vomiting.  Four to five times a day. Every day. For NINE weeks.  

At first we thought it was anesthesia related. Sometimes the gut is stunned and needs time to "wake up."  Then we thought his stomach was crowded from having his abdominal muscles sewn back together.  But the vomiting continued.  He had an upper GI done.  Then a gastric emptying study.  We added meds.  We added Pediasure. 

Let me go, I totally know how to work this machine!

Nuclear boy!  This was the same room we had the scan that ultimately led to his original liver disease diagnosis.  He was only a month old then though and slept through the entire scan.  This time?  He wanted to know exactly what was going on.

Nothing helped and after a exhausting and puke filled Thanksgiving weekend, Megatron had lost too much weight. He was admitted to the hospital and had a feeding (NG) tube placed in his nose to do continuous feeds to help him gain weight while the doctors hunted down the reason for the vomiting.
This is our first hospital stay with a toddler and not a baby so we visited the toy room to play.
We have had a feeding pump at home before (pre-transplant) so the hospital felt comfortable sending us home after an upper endoscopy and three days inpatient.  We had a new learning curve once we got home.  Megatron was hooked up to the feeding pump continuously and naturally this is when he decided to start walking.  We spent several days following him everywhere he went, carrying the pump and bag of formula.

One of us slept in his room every night because he kept rolling around and would get tangled up in the tubing.  Everyone was exhausted.  Between the lack of sleep, the piles and piles of laundry from all the vomiting, the worry and then the time in the hospital, we were all fried.

A couple days after being discharged, we got the results of the biopsies taken during the endoscopy. Everything at that time pointed towards food allergies.  Widespread food allergies.  We had to eliminate dairy, nuts, soy, wheat and egg.  We went into survival mode yet again.   What on earth do we feed this child?!  The formula going through the feeding tube was meeting his nutritional needs but the goal is to cut the tube feeds as soon as possible.  We didn't want him to forget his oral skills.

We went to the allergist and had a large skin prick test done.  They pricked his entire back and both arms with potential allergens.  That showed allergies to egg and peanut. So we can add back the other foods, right?  No. He's still showing some kind of reaction in his blood stream. And that has the doctors somewhat stumped. 
The second skin prick test this little dude has gone through.
But he had fun spinning the doctor's stool in the allergy clinic
And that's where we are right now.  He still has the feeding tube in place but we aren't using it. We are desperately trying to get him to drink the formula by mouth so we can have the tube taken out.  We have two appointments this coming week and we hope to have more answers. At least with his liver disease, we always knew what we were dealing with.  This latest challenge has too much unknown for my comfort level.

I will say that despite all that has been going on since October, our little man keeps smiling and doing normal toddler stuff.  At 17 months, he's all toddler boy: sticking his fingers in his nose and anywhere else they will fit, putting everything in his mouth, flashing an ornery grin when he's up to no good, etc.   We just keep reminding ourselves that at least he's not in liver failure anymore!

"I'll turn your world totally upside down."  That's an understatement!

Looking all sweet and innocent with his little feet crossed.