Back to Stanford

Unfortunately we are headed back up to Stanford a little sooner than expected. This last Tuesday I took Max to his two month wellness check with his new pediatrician, and when the doctor measured his oxygen saturations they were in the 60s. The low oxygen levels were not totally unexpected as Max's saturations seemed to be dropping little by little every cardiology visit. I immediately called Dr. Doshi (Max's cardiologist) and she then contacted Stanford. We wanted Stanford to know exactly what was going on before their big heart conference every Wednesday morning. At this weekly conference surgeons, cardiology intensivists, and pediatric cardiologists present different patients and then make surgical plans as a team. After discussing Max, the joint  decision was made for us to head back up to Stanford this week to get more information.  On Thursday, Max is scheduled for a sedated MRI in order to obtain a 3-D image of his heart and specifically his VSD (hole in his heart with the strange attachments of the mitral valve). From the MRI his anesthesiology team will take him straight to the cath lab where they will collect as much data as possible about what is going on with Max's heart. They suspect that Max is probably just streaming blue blood out his aorta but the cath will tell them for sure. Depending on what information is collected during the cath, the doctors may perform another balloon procedure to reopen his ASD to produce more mixing of his red and blue blood. We are hoping to just be in the hospital a few days but we have learned from previous experience that we could be there awhile. If the cath improves Max's oxygen levels they will probably send us home to let him grow some more. If the cath doesn't improve Max's oxygen saturations, then it all depends on how the VSD looks in 3-D.  Dr. Hanley may decide to go ahead and do his full repair even though Max isn't as big as he originally wanted or he may decide to keep Max close by at the Ronald McDonald house on home oxygen and just let him grow until he feels it is safe to do Max's full repair.

We currently have Max on home oxygen 24 hours per day. It has been really stressful to play nurse: measuring his levels and adjusting his flow accordingly, but we are slowly getting used to it. Although we are completely home bound, the good news is that Max seems to have a lot more energy since starting the oxygen. We have gotten more smiles and coos in the last three days on oxygen than the whole previous week combined.

There is never a dull moment in our house these days. Between the monitors and the joys of three kids it can be overwhelming. But we know all too soon that our family will be split up again so we are just trying to embrace the craziness. Please keep mighty max in your  prayers. Please pray that we arrive at LPCH safely. Please pray that the procedures are performed without complication and that doctors get the answers they are looking for. I will keep the updates coming and will try to update everyone late Thursday/Friday with more information.

Love my big brother and sister

happy baby

Showing everyone how strong I am