so mya was born on november 8th 2013 not breathing. she was vented - TopicsExpress

so mya was born on november 8th 2013 not breathing. she was vented and shortly after survival flight down to motts childrens hospital nicu, where we stayed for three weeks with many tests and tons of doctors. she was diagnosed with many anomalies. her official diagnosies are as follows.....double outlet right ventrical, vsd, transposition of the great arteries, chromosome 15q11.2 deletion, impreferate anus, duplicate ingrenal collecting systems, intestinal malrotation, and rectovaginal fistula. we are lucky that they decided nothing was emergent so week ofthanksgiving we got to take her home. we had seen a cardiologist from ann arbor up in marquette a few times between then and now to moniter her heart and pulse ox, as well as weekly visits with pediatrician and once a week for home health nurse. jan 14th we were back down here in ann arbor for a routine clinic with her pediatric surgeons for her lower gi issues and then her cardiologist had wanted sedated echo while we were here since the clinic back home the week before she was not happy about it lol and since we were all having issues figuring out which numbers were right for her pulse ox we were going to get a gas blood draw. once the echo was examined dr. thorson her cardiologist decided that we should prob not wait any long to do her open heart repair on the vsd.instead of waiting til the next week it got moved up to the next morning because she started having spells. she had her open heart surgury on january 15th. repair went really well but she went into cardiac arrest at one point when taking her off the bypass machine and was put on an ecmo machine for two days .she was doing really well for about two days then went into cardiac arrest again due to pulminary hypertension crisis.. after that they did up her sedation and put her on paralosis drug for a few days to let her body recover...this week after that scare has been mostly uphill. no major episodes. she did test positive for pnamonia and was treated for that

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