Complications !

We ask all of you for your prayers right now !

Joseph underwent his cardiac catheterization yesterday. Joseph had local anesthesia and heavy sedation during the procedure. During the procedure, Joseph had trouble maintaining adequate oxygen levels in his blood which fell, and he required 100 percent oxygen. This complication during his heart cath was unexpected. Fortunately, they were able to stabilize Joseph and no ventilator was required. The doctors were able to complete the procedure, and had unexpected findings. Joseph’s heart is already compromised being enlarged on one side and atrophied on the other. The doctors found and diagnosed Joseph with pulmonary hypertension along with all the other problems he is already struggling with. Joseph already struggles with chest pain, fatigue especially with activity and exertion and occasionally faint blue around his mouth. Now, he may be having difficulty breathing as well and not know how to accurately describe that to us. The doctors are not sure of the cause of the pulmonary hypertension, although he probably has had it for a while. Without knowing the exact cause, we suspect it may have been there since he was little when he had a lot of lung infections. Unfortunately, pulmonary hypertension can be progressive and fatal and can lead to heart failure and often leads to death within three years. Unfortunately, this has a huge financial impact on our family. The doctors are conferencing to formulate a plan and expect several procedures may be necessary to try and find the cause. If they can find the cause, that would help treatment. Soo, more procedures (probably a sleep study, another heart cath later to recheck his pressures, an ENT, pulmonary specialist etc.). The atrial double switch surgery that we were hoping Joseph could have would have extended his life from 5 years to about 50 to 60 years old, and now is on hold indefinitely because of this newest complication. We thought we had hurdled at least the major medical problems, and were on our way to things being better with a longer and better life for Joseph, and now we may have him for much shorter than we expected as his condition just keeps getting worse. Overall, he looks okay. Praise God he still is active. As little boys go, he likes to be in the midst of everything. He has such great spunk and a joy and smile that truly are a gift from God which help him through all this tough stuff. Joseph is healing from the procedure and up and around again. Praise God the doctors found it. Without the heart catheterization, we would not even have known until he was much worse. At least this way, the doctors can give him medication to help. We don’t have any previous measures from his open heart surgery in October to compare, because LPCH didn’t do a heart cath or get those kinds of measurements. Looking back, I believe God had angels in his plan for us. It was a Godsend to be at Children’s Hospital LA where they could find the pulmonary hypertension. Praise God Joseph DID get the pacemaker in October last year when he did to help his little heart keep going, and especially since his body depends on that pacemaker more and more. It just breaks my heart to see though how it does limit him and cause him pain. Pain that I can’t fix or heal or take away. I can only hug him and tell him how much I love him and do what we can.

Michael then got some really serious headaches so badly that he was throwing up several times during the day while we were waiting for Joseph during his procedure and recovery. They have been coming pretty constant. Tylenol helps take the edge off, but we need to get him to another neurologist for a new consult to try and find the cause. The previous neurologist did not really give us any answers for his headaches. Lord, help us.