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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Thursday, November 27, 2014

Admit required

During Bortis treatment last night, Gator was having a very difficult time keeping his oxygen happy. He went from 1 liter of oxygen to 3 liters. He wouldn't tolerate even trying to come down a little.. This posed a slight logistical issue because our travel tank was seriously low and our concentrator at home only goes to 2 liters.. Planning discharge was tricky but we figured it out and had a late night delivery of a concentrator that could handle his new liter flow. We were discharged on my comfort level on his management. I felt good taking him home at that point and we packed up and went to the car. As I was unloading him from the car, he began to cry and get very very sad. He told me his stomach hurt really bad. More than when we first got here. Not wanting to jump into the car and head home till we felt good about it together we sat in the car and said a prayer. Then we called daddy. Daddy calmed me down considerably and suggested having them do a quick check on him before we got down the road. As soon as we made it back to RTU they could see how yucky he felt and decided to intervene with more IV lasix. We will be running more tests today and that about sums up what's going on. Jeff got up and ran a 5k this morning.. The girls and daddy and grandma and papa Homer went to breakfast. We are all having an awesome holiday. Just rolling Homer style.. 

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