Jace Jones

Hi, My name is Brook Masters. I am here fundraising for my BEST FRIEND & her 6-month-old son Jace Cole Jones. As most of you know Jessica and have followed her story with Jace, it has been a roller coaster ride! Below is a statement from Jessica about Jaces diagnosis and condition! I’m collecting money just to ease some of the stress for the family. Jess will be off work a lot and won’t get paid, along with medical bills. Anything you can donate to help goes a long way! Please keep them in your prayers as much as possible! We all love you Jace, Jess, & John! 

We want to thank everyone from the bottoms of our hearts for reaching out and praying so hard for our baby. I am finally at a point where I can discuss what has happened this week and where we are now. Please bear with me, it’s a whole new world we are trying to navigate and I’m taking it day by day. Monday, Jace, was able to have his bronchoscope done and what the doctors found was quite alarming. While Jace was under, the ENT (Dr. Matt Partain), called me and told me we needed to meet and talk about what they found and come up with a new course of treatment. We were shown pictures of Jace’s airway, which is normally open all the way down and you can see to the branching of the lungs. Jace’s airway was almost completely closed with a sliver of an opening. This is the reason he was having to take such big breaths and was so noisy when breathing. Due to the severity of his airway being so closed off, I was given 3 options of treatment. (2 weren’t even viable options) We had to make the tough decision to let the ENT do a tracheostomy and place a trach on Jace. At this point, we had never even been told this was a possibility of his procedure Monday so to say we were taken off guard is putting it lightly. Jace made it through the surgery well and we are now on the 7th floor PICU. (Room 7207) When we were allowed to come see him after his tracheostomy, it was much harder than I could have imagined. The surgeon told us Jace would be heavily sedated and on a paralytic for 5-7 days while his incision around his trach heals. He is currently on a ventilator helping him breath since he is currently paralyzed. Due to his age, he has to be paralyzed so he doesn’t pull the trach or roll over onto it. This is the easiest way to assure it can heal properly. On Friday or Saturday, the plan is to do his first trach change and take him off the paralytic and try to wake him up. We will also try to wean him off the vent at that time. Everyday our plan can change so it’s hard answer questions about his treatment. Our goal is to get him out of the ICU once he wakes up and heals and moved back to the Pulmonary floor. There we will be trained extensively on how to maintain his trach at home and how to take care of him! The end goal is to remove the trach when Jace is close to 2 years of age. We have a long road until we have to approach that surgery. There is a good chance he will need a total airway reconstruction. This is so far in the future that we have no idea exactly when and what treatment he will need to remove the trach. This has been one of the hardest weeks of my life. I thought living in the NICU for 66 days was bad. Jace just keeps surprising us and keeping us on our toes. We have a very long road ahead of us but I’m trying to stay as positive as possible and let my baby know we are here for him. We have been able to go home and get a little rest this week while he is taking his 5-7 day nap. We know once they wake him up, we will need to be here around the clock again helping take care of him and learning about his new equipment. We would appreciate not a lot of questions at this time because we don’t not have all the answers and neither do the doctors. This is a day by day thing, and we have several more weeks, could be months, at the hospital to get him ready to come home. Hopefully by the age of 2 when he is ready to have this removed and his airway corrected, this will just be a memory of the past. He should grow up living a normal life and he most likely will not remember any of this. I think it’s the hardest for all us of close to him seeing him asleep and not his normal bubbly self. I’m counting down the minutes an seconds until he wakes up and I can hold my baby again. I may end up posting a picture in the comments but it can be hard to see him like this. I’m not sure that many people would want to or can handle seeing him this way. He is in the best care of amazing nurses, respiratory therapist, and doctors around the world! We have been taken care of and continue to have faith in their ways of treating our baby! Sorry for the long post, and sorry for the delay! I’m finally able to talk without having a breakdown and I’m here for all the positivity! I know I will have good and bad days but being strong for Jace is my main concern. I had been asking “why me” and “why Jace” all week. I know God made me his mommy because I am strong enough to handle this and take give Jace all the love and care he needs! #JaceStrong