Jammin for Jakob
Jakob is a 10 year old boy. Born August 23, 2005. The very first moment I saw him, I knew I would love him with every breathe I ever took. While in-utero Jakob was diagnosed with hypoplastic left heart syndrome (HLHS) He would need a series of 3 open heart surgeries to survive. The first surgery called the Norwood, he had at just 3 days old, the second called Glenn was had at 3 months old, and the final surgery Fontan was had at 23 months. After the series of surgeries he would have a single ventricle heart that does all the work of a double ventricle heart. He had all of his surgeries at Childrens Healthcare of Atlanta Egelston.
He thrived during and after these surgeries. He was a normal little boy! He ran, played, got into trouble, and even played baseball. His oxygen was always in the 92-95%. For a Fontan that is unheard of!!!!! After 8 years post Fontan, not a single issue my world was shaken! Jakob started not feeling well in the beginning of the week and I took him to urgent care. They told me he had allergies and gave him a inhaler and Claritin. They did a chest X-ray which was clear and sent us in our way. That Sunday Jakob just looked horrible. He was tired, cyanotic, and just didn't feel good. I took him to the ER. They gave him 2 xopanex treatments and some fluids and told us to go ton cardiologist on Monday. On Monday, when we went to his Dr. He did an echo and saw he had a plural effusion on one lung, and that his heart function was extremely poor. He called an ambulance and sent us to Egelston. I had never been so scared!!!!!
Once we got to Egelston they informed me that Jakob's heart was functioning at 16%. They have done many tests and can't quite figure out what caused the rapid decline in his heart function. Which has lead us to a new journey on our battle with CHD.
Over the past several days he's had a lot of tests done. They still haven't figured out if his heart failure was brought on by the stress of having a single ventricle, or by a viral infection. Regardless it has to have some function in order to survive. The past few days have had several scary moments, but have proven to me how much of a fighter Jakob is! With Jakob having such poor heart function right now it's not certain that it will restore, or if it took too much of a hit. Only time will determine that.
So with all the uncertainty we have to prepare for every situation. The only other option at that point would be a heart transplant. Which I was told about when he was diagnosed with hypoplastic left heart syndrome inutero. It was never a matter of if but a matter of when. So if that time is now, so be it!
He was officially placed on the transplant list this evening. This isn't necessarily meaning that it will happen, but unfortunately we don't know and time isn't on our side. We need to be prepared. I pray that we don't have to do a transplant, but also know that there are some benefits of having one! My baby would finally have a full heart!!!!!!!!!! The thought of it makes me tear up. I know regardless of the path we take that Jakob is so strong and has excelled at every hurtle he's ever seen. I'm positive this will be no different.
Whatever journey we take, we have faith that he will be just fine. No matter how hard it may seem at times, I know what Jakob is and he is a fighter. I appreciate all the thoughts, prayers, calls, and texts! I will update with any new information as it comes. As of now it's a matter of whatever happens first! One day at a time!
The outpouring of love and support has been amazing!!!! I know I have an amazing kid, but to see how many people love him reassures me!
The SPBA has set up a go fund me account to help our family is this difficult time. If you would like to donate the link is below. https://dm2.gofund.me/jakobmcgrawfund
You can also show your support and purchase a Jammin For Jakob shirt. We are waiting for them to come so more info to follow.