Words that were thrown out on us that turned our world upside down. What should have been a regular monthly check up for my 8-week-old boy turned into an 8.5 hour surgery…
When his pediatrician told us that we needed to get blood work for him because he was a little more yellow in color and his liver was slightly enlarged, and the fastest way was to an ER, I didn’t think that visit would turn into 2 different hospital stays and a major surgery.
The ER pediatrician attempted so many times to draw blood from him; it was heartbreaking to see him getting poked left and right. Results came back within an hour, and it was not good, per the ER resident. The bilirubin count was too high, and not just the bilirubin counts where they can stick him under the UV light, it was the bad one, the one that affects his liver. The doctor told us he’s going to need to be admitted for further tests. We waited for a day for the GI specialist to let us know what is wrong with our lil trooper. She told us, it might be Biliary Atresia. (a blockage in the liver duct that produces the bile – http://www.baaware.org/) and that we should transfer to another hospital. Thru out this whole time, his pediatrician has been touching base with us and felt that what my son has needs to be expedite and taken care of ASAP, so they did their magic and we ended up transferring to Mount Sinai. I’m calm and just want everything anyone can do to make him feel better.
When we arrived here at late Thursday, they wanted an IV in him. Most tiny babies have hard veins to find, they did not imagine that my lil man would be as well. That night, it took 2 specialized nurses that put IV on newborns, 1 resident and 1 nurse, to try to find his veins. I was in tears with him. I wanted them to stick me. After an hour and half (but felt like forever to me), they said “sorry, we tried, he’s a hard stick.” Another term I’ve come accustom too thru out this whole week. On Friday morning, they tried again…even the IV nurse could not do it. So when it was time for his liver biopsy, they had to do it there. I was waiting in the waiting room, what would be a 10 minute procedure turned into a 30 minute one cause they were having issues to put him an IV in him. It was there that I broke down, not only from after hearing about this condition more from the doctor but also hearing him cry in the other room and I cant hold him. I asked myself “why my little boy. How come he had to be 1 out of the 15,000 that can be diagnosed with this rare disease? How did it come about? Would he not need to go thru this had we found out earlier?”
Later on that day, the results came and it was suggested he has biliary atresia. More medical terms were thrown at us, but this whole time I’m scared for him. They have to open my tiny little boy up and do some reconstructing to his organs and but first it needs to be explored to see if it’s even biliary atresia. Lucky for us, the amazing team of liver doctors and surgeons explained everything, step by step, the outcomes, the risk, everything we wanted to know and needed to know were answered.
With his procedure scheduled for the following Tuesday, I had the weekend to spend quality time with him. I’ve been sleeping in the hospital since he’s been admitted. That weekend whenever he was up, I held him. When he wanted to be rocked the sleep, I cared less about the spoiling rule. I did everything I was told not to do that spoils him. My precious little boy knew nothing that would happen to him, he was happy! He laughed, smiled, eat, pooped, and peed like a normal baby would do.
The day he had his surgery, it was the longest ever. I waited forever. I was scared, nervous and overwhelmed. I was hoping that surgery wasn’t too long, but it lasted longer then they expect. When 11:00pm came around and we were the only patient’s family in the waiting room, I was worried and a wreck, I just wanted to see my lil boy. Finally at 11:30pm, the surgeon comes out, I jumped up and when I looked closer, he had a smile on his face (that made me relax a little). He sat down, and explained to us everything. How his duct never formed properly and he did have to perform the procedure Kasai on him. He said everything went well and no complications during the surgery and that we shall see how successful this is. (It’ll take at least 4 months to see results). Seeing my little man puffy from all the liquids and not being able to hold him, killed me, but I was glad the worse part is over.
It’s been 3 days, and my brave little man has been in ICQ and stats are good. His nurses love him! He’s doing everything he should be doing to his road of recovery.
Words can not express how thankful I am of a great team here at Mount Sinai taking care of my son. We’re praying that the Kasai will be a success and but I already know he’s a fighter and it will be.
Thank you everyone for your support, prayers and well wishes! It means the world to us.
~ Mama Winnie