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.
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.
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!