CDH - Repair Surgery

After going off ECMO Joseph went through some very rough days. His oxygen levels, blood pressure and heart rate kept going crazy some days up and some days down. So the doctors decided that the best thing to do at this point was to do his repair surgery before everything started to go down and not come back up. As soon as we would schedule his surgery he would start doing better and we would re-schedule. After a few days of scheduling and re-scheduling his repair surgery, Joseph finally had his surgery this past Monday 2/23. The doctors were giving us very low chances of Joseph surviving the surgery, but we wanted to risk it anyways b/c we knew it was the only way we could give him a chance in life since nothing else was working. The Oscillator and Nitric Oxide where on the highest settings and he was on over 10 medications. Joseph’s surgery was a success! He is sooo strong and he is only 3 weeks. After the surgery the surgeons told us that Joseph was missing the entire left side of his diaphragm and that’s why his intestines were all in his chest moving his heart to the right and pressing his lungs. Joseph did great after the surgery but on Tuesday night his heart rate started to go up on the 190’s to 205 range and his blood pressure started to go down. On Wednesday the doctor ordered some X-ray’s to see what was going on and they found that he had air in his abdomen that was coming from his chest “leaking” through the gortex patch they placed as a diaphragm. The air comes from the space the intestines were in. So on Wednesday just at the age of 3 weeks Joseph had his 4th surgery to place a tube in his abdomen to release the air. The surgery went well but it didn’t fix the problem he was still having issues with his heart rate and blood pressure. The pressure in his lungs is soooo strong b/c of the pulmonary hypertension that is making his heart work a lot more and that's why his heart rate is so high and starting to fail.

Please keep praying for Joseph.

~ Carla