Second opinion requested

There is debate within CCMC as to what is keeping Matthew from recovering. The PICU staff believes the mitral valve leakage is sever and too much for Matthew to overcome without surgical intervention. The cardiac team agrees that he has moderate leakage but they have seen other children with the same amount of leakage recover fine. We have requested a second opinion and they have sent the echos and other data to the valve expert in Boston (Dr Pedro del Nido). We expect to hear back from him this week. I am praying that he thinks Matthew will recover from this and be fine without another surgery. However, we are preparing ourselves for the possibility that we will need to go to Boston for a second surgery. The only options are to try to repair the valve more (which the surgeon here thinks can not be done) or replace it with a mechanical valve.

Today Matthew is actually doing well but is having trouble sleeping and his heart rate is a bit high. He seems jittery and nervous. He also has a temperature (again). He is being weaned from the sedation meds which he has been on for the better part of a month and is going through big time withdrawal. They are trying to manage the symptoms by giving him morphine every 4 hours and small doses of fentanyl when needed. They are also taking him off the CPAP for 90 minutes each time he feeds (takes 2 ounces every 3 to 4 hours). He is still receiving IV nutrition but he likes to get something in his belly too! Of course, now we need him to poop.

Mary and Mikey visited their brother this morning and then Grandma stayed with him so I could come home for most of the day.