Thursday Max was officially discharged directly from the CVICU. Discharge was up in the air after Max had a rough night. Max's nurse informed us that he only slept two hours the night before and refused to take a bottle. Once I showed up Max looked at me like where have you been and gulped down 3.5 oz of milk. Nothing like mommy guilt for not being there with your baby but there are no beds in the ICU and sleeping is not allowed. Max still seemed very wired and just couldn't settle to sleep no matter what we tried. The team thought that he was experiencing a combination of ICU psychosis and withdrawal. We thought the best thing for Max was to get him out of the hospital and back to the quiet Ronald McDonald house. Thursday afternoon Max was very fussy and refused to settle and go to sleep. That evening I made a desperate call to the fellow on call and explained to her that Max had slept less than 4 hours in a 36 hour period. We talked about readmitting Max for a morphine taper, but after a late night run to the drug store Max passed out and stayed asleep for 8 hours straight. Each day he is slowly coming back... less fussy, less wired, and more and more smiles and giggles.
Upon Max's discharge I had pretty much given up on getting to see Max's surgeon Dr. Frank Hanley and thank him. As we were packing up and waiting for some paperwork for discharge we got a nice surprise...Dr. Hanley graced us with his presence. He generally does not hang out in the ICU so it was a very unexpected visit. I finally got to give this amazing man a hug and thank him for giving my baby a chance. Then Dr. Reddy, Max's attending, offered to take a picture of the family with Dr. Hanley (Luke was napping). I can't wait to show Max some day the gentle man that changed the course of his life!!!
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| The man!!! |
Multiple attendings throughout Max's short stay in the ICU remarked what an amazing repair Max was lucky to receive. Brad and I knew that there were only a handful of surgeons across the nation that actually could give Max a biventricular repair, but I guess we didn't realize the high likelihood of a different outcome. Dr. Reddy trained at Boston Children's and remarked that she thinks Dr. Hanley is one of the top three surgeons in the world! I read recently that this man selected pediatric cardio thoracic surgery because it was the one area of surgery that scared him. Thirty something years ago outcomes from open heart surgery were very poor and Dr. Hanley saw this as an opportunity to really make a difference! We are lucky to have Dr. Doshi who made sure we ended up in the right institution with the right surgeon for Max. We have now seen too many stories of single ventricle repairs and bad repairs simply by parents not having the knowledge and resources for their child's specific condition. Not all pediatric cardio thoracic surgeons and centers are created equal. Some of these institutions have 40% survival rates and places like Stanford publicly release their 98% survival rates and treat way more complicated kids. There are several organizations trying to combat this problem and Brad and I plan on spending our time and money helping other less fortunate families make the most informed decisions for their kids.
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| On my way home! |
In the mean time we are going to enjoy being a family of five under one roof. Molly and Luke flew home with my mom yesterday and we are going to drive Max back. When I said bye to the kids at the Airport yesterday Molly said to me, "Starting tomorrow we get to ALL be at our house for FOREVER!" Through the tears I know we have all been through a lot over the past few months, but we now get to be a family of five for FOREVER thanks to Dr. Hanley and all the wonderful people at LPCH!
Beautiful.
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