One day at a time😍

Ok... Let's see.. Brody had his chest tube removed..hoping his lungs continue to improve:) His internal jugular IV ( in his neck) was taken out!!! He took a trip to radiology to get a NJ ( naso jejunum) line into his intestines because he continues to vomit the other tubes... This one is in the beginning of his small intestines. Hoping he doesn't vomit this one! They are feeding via the NJ, he shows interest in eating and drinking but is just unable to keep anything down. We let him eat and drink as he wishes and just change clothes and linens multiple... multiple times a day.

Gastroenterology was consulted and he will go for an upper GI study sometime this week. He continues to show us little signs of Brody. He says his words... When he feels up to it.. Kisses us and loves to drink Gatorade!  We watch movies, take naps and in the afternoon a wagon ride. He is still very weak and continues being weaned from narcotics so the combination makes him sleepy, or if they wean down the narcotics he still vomits from withdrawing, or he's just a cranky two year old  tied to to many lines! Our little man is starting over... He has to regain his strength to learn how to 

Stand again.. Walk again... Run again... We pray for the day he can jump out of bed!

Every day is different. Today they are starting to wean the nitric, medication that is going with oxygen to help his pulmonary blood flow! A new medication was started to replace the nitric. Small steps... Big steps... One thing at a time. They haven't even touched his medications that help the function of the heart so perhaps next week they may start to wean the milirinone ( medication that helps the squeeze of the heart). His team here at CHOP is amazing, we know he is in the best place, just hoping and praying little by little he continues to improve! Thank you for all the continued love and support. It can be very taxing physically, emotionally and financially  having a child in the hospital. A huge thank you to my cousins Jessica and Corrie and everyone who has contributed to the fundraising  for Brody's medical  care. Words can not describe how thankful we are. Our main goal is to focus on Brody, and this has allowed us to do just that! 

Http://fundly.com/Brody-s-perfect-heart

Continue to pray for our boy! He is Strong!

Pray his function stays strong, pray his liver swelling goes down, and pray that we can start getting up and out of bed more! Food and exercise is good for healing! Some of the most basic things make a huge difference!! We are so loved, Brody is so loved! We try and be happy everyday for him, one day at a time!!  Tomorrow is never promised.. God is good! Kiss the ones you love! Go Brody Go!!!