Jackson's Journey (6/28/18-12/26/18)
Jackson was born prematurely at just 25 weeks. Born June 28th, 2018, at MERCY hospital and weighing a whopping 1 LB! Being born so early as a micro-preemie has been a struggle to say the least for this little guy. He has had to endure countless testing, blood draws, blood transfusions, procedures, medicines, surgeries, and much much more. He is on a constant ventilator machine breathing for him because his lungs are so damaged and fragile they can not do much on their own. Aside from Jackson struggling with severe lung problems he also has severe heart problems, one of them was an Atrial Septal Defect, or ASD. We thought we could see the finish line of bringing Jackson home, when open heart surgery was brought into play. They needed to open Jackson's heart to repair the ASD with only hopes that it helps repair his very fragile lungs. We were transferred to Cardinal Glennon for surgery. After a month there, and 2 open heart surgeries, one of which to close his chest cavity, we returned to Mercy to continue care and hopes of hitting the fast track home. When we returned doctor's noticed something strange about Jackson. His hands, arms, legs, feet, and neck were not growing. Jackson was diagnosed with skeletal dysplasia. And placed in the catorgory of "less than 1%" of his age for growth. Shortly after returning we tried removing the breathing tube for the 3rd time. It was short lived. The surgery was unsuccessful and the breathing tube was placed back in. After discussing our options with doctor's we realized our last resort was a tracheostomy. In one long surgery Jackson had a trach put in, a feeding port placed into his belly, and 3 hernias fixed. Things still were not better. We were stable but still critical. We had a meeting with all doctor's and the mention of a lung and/or heart transplant was brought up. Our world was shaken. Thinking of putting him through another major surgery and the risk of losing him. The damage to the lungs are causing damage to his heart. Giving him Pulmonary hypertension so severe we are at severe risk for heart failure. We were given options of trying experimental medicines and stronger medicines as last resorts before looking into transplants. We had 2 great days, we thought things were finally looking up, when we got a phone call late at night that Jackson was doing bad. We rushed up. At 530am that next morning Jackson had his first seizure. Over the course of the next 3 hours he had 9+ consecutive seizures. Some lasting close to 20 minutes each. They did a head ultrasound and found fluid on his brain. It was meningitis. He was already so fragile and critical and now is battling a life threatening infection. He is on so many medications. For infections, his heart, lungs, sedation, and much much more for problems we havent even mentioned. We are still actively seeking answers with genetic testing to try to find out which type of dwarfism he has. In Hope's that this will.give us answers about why this is all happening. Insurance has helped with some cost but not all. And does not cover genetic testing. We are at a point where it will be thousands out of pocket to finish the testing. We are looking at another transfer soon to prepare for being put on the transplant list. We are going on 6 months of being in the hospital. With no hopes of being able to leave anytime soon, if even at all. Cost are quickly adding up. Home bills, missed work, gas money, food cost, medical bills, and so much more. When and if Jackson does get to come home, he will need at home nurses, and lots of medical equipment and full time care. Crowd funding was hoping to be our last option. We have given to countless gofundme charities in the past but never imagined we would be relying on one of our own. We appricate anything given, even if just prayers! Please keep baby Jackson in your thoughts and pray we can bring him home soon. Here is a link to follow his journey... https://www.facebook.com/groups/224663498254059/ Update: 12/26/18 Jackson Ray has lost his battle with his heart and lung problems. He fought everyday of his life to be here. His body just tired. I know he is breathing easy now. And pain free. I thank you all for your donations. There are still needed. Medical bills are still coming in, and now we are planning for a funeral. We appreciate anything you can give.+ Read More
The transfer to the new hospital happened alot faster than expected! We transferred for our 4th time now. We're working on getting settled and meeting everyone. Taking the holiday time to let Jackson rest and recuperate for our upcoming journeys.
I know it's been a while since an update so I updated the whole story to fill everyone in! Thank you all for your prayers.
After a rough and scary start yesterday morning and 7 hours of surgery, Jackson had his heart repaired. They were able to restart his heart and lungs with out any complications. He did have a fair amount of swelling in his heart. So they were unable to close his chest bone. They will be waiting around 3 days for the swelling to go down, then will preform another surgery to go in and reopen the skin, close the breast bone, and then reclose the entire incision. Its been a long tiring. We are all mentally and physically drained. But even if this surgery helps Jackson alittle bit, then it will all have been worth it! Thank you everyone for your kind words, prayers, support, and love! You guys are all amazing!