Sunday, February 2, 2014

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.


  1. Prayers to your little boy and you and your husband.

  2. These pictures of your sweet little boy break my heart. It's not fair that you both have to go through all of this. I hope he gets the liver he needs soon and life can slow down a bit for you all. I'll be thinking of you!

  3. Oh my gosh... I am so sorry Amber! You are doing an amazing job. Hang in there. I am thinking of you guys.

  4. Praying for you all! stupid water works are on...

  5. He is the sweetest thing. The picture of him on the transport gurney is so sweet and so sad at the same time. He looks so chill even though there are major things going on for him. Which made me think about how it's all just normal for him. I don't know if that makes it better or shouldn't be his normal but when you don't know different it doesn't seem as traumatic. I know his young mind doesn't even process in that way yet. He definitely looks like a real trooper. As are you and The Pilot! It's amazing how the perseverance and mind over matter, just keep going attitude you learned from marathon training is working to your advantage in life. Keep going mama! This will be the best finish line party EVER!

  6. I am so sorry you are going through this. :-( Many prayers will be said for your family that the transplant happens as soon as possible so your little guy can get on the road to recovery.

  7. oh honey my heart is breaking,for you,all. please know others are praying for you and shedding tears. I'm up in Cleveland, so please please know if there is anything i can do to help i would love to just let me know ( pumped breastmilk, dinner, anything!

  8. Oh poor baby boy! I hope he can get a liver soon. Praying that you get through everything as smoothly as possible.