Day 10

End of day 10 and today was another eventful day of the life of Liam Kent!! When we got here this morning his heart was out of rhythm and beating very fast! They added a new med called amiodarone to help balance it out! Dr Hirsch his surgeon still confident in all of it! She said its not surprising to see arrhythmia in hetertaxy children! On Liam's stomach he has external pacemaker leads. They are able to manipulate his heart on hopes it will go back onto normal sinus rhythm. He liked what they did and it jumped right back in rhythm. He slowed down on his urination from last night and the fluid was not coming off quickly enough so an X-ray and an abdominal ultrasound was done and fluid accumulated around the lungs. Dr Hirsch wanted to take a more aggressive approach for the simple fact of getting him off the vent! So she inserted a peritoneal drain in his abdomen! So much fluid drained from my little boys abdominal cavity and urination increased! They said he had so much fluid built up that it was pushing on his diaphragm making it hard for him to breath! When he was first born they were able to use his umbilical cord for access to an arteriole line! Well from his swelling and moving him around it continued to inch it's way out! So today the physician following Liam put an arteriole line in his leg! It took two sticks but they finally got it! With this in his leg they need to keep a close eye on it because they go thru the femoral artery to do so! Many more pokes in his body then before but Chris continues to remind me they only do it to make him better! His ventilator is down significantly and they have decreased some of his meds! Dr Hirsch feels he is making significant progress! Tonight his heart is out of rhythm again... But BP continues to stay stable! So much fluid comes off they need to sometimes replenish it back in. A never ending cycle.. He started making noises like a snoring. It's sounds cute but when a patient is ventilated you shouldn't hear anything.. The respiratory therapist said he has a leak in his tube! Now that the swelling is off his tubing is smaller in his mouth creating noise! The nurse on staff tonight said depending on what they want to do in regards to this all depends on how long it will be before they extubate him. They might change it out.. Which sounds so scary to me but I have the best doctors in the world working on my baby! I need to trust in all of it! I only allow myself 5 minutes a day to cry and then it's my game face for him! I read him a book called belly button love that my mom bought him!! I think I spent 3 of those 5 minutes crying while reading it! It's all about how a mommy and baby are connected by the umbilical cord and how they are always connected no matter what!! Leaving at night is the hardest thing to do!! I write my blog at his bedside every night to help me cope and understand the day! It's kind of like once I hit publish then post it is the end of the game and time to recharge for the next one..