100,000 Miles and 132 days
Steve’s car turned over to 100,000 miles today and Porter has reached 132 days in thePICU. The only reason I know that Porter has been in the PICU for 132 days is because I was working on his second Beads of Courage necklace today and one of the questions was how many days has the person been “inpatient”. So thanks to Google I was able to find a date calculator because I was too lazy today to physically count the days and it said 132 days from January 3rd to May 15th. He’s been alive for 176 days, 14ish spent in the NICU and 132 spent in the PICU. He's spent the majority of his life in the hospital~ time to get him out!!!
This week has been a tough one. Porter should have been home by now, growing and thriving, sleeping in his crib, taking walks down the street (in his stroller of course) but he is still in his room in the PICU heavily sedated with morphine so he doesn’t get agitated which could constrict blood flow through his heart causing him to code. We look at pictures of him at Easter and see him now and he looks totally different. He’s mad and seems uncomfortable when he wakes up, doesn’t want to be messed with, would only stay in my arms for about 15 minutes where a week ago we could have held him all day and had him doing log rolls down his crib. We thank God he wasn’t home a week ago when he coded as we’re not sure he would still be with us.
The cardiac MRI he had Tuesday went well and he tolerated the transport downstairs well which gave the docs more confidence in his ability to be transferred to another hospital for surgery if he is not able to have it done at UNC. We saw 3D images of Porter’s heart today and saw it pumping away. The cardiologist showed us the aortic valve that the surgeons would be going through to trench out muscle and said it’s about 1mm in diameter~ talk about microscopic! We are waiting for the recommendations from our docs at UNC, Cardiologists and surgeons at Texas Children’s Hospital, and The Mayo Clinic to find out where the best place for Porter to have this surgery. Needless to say we don’t want to go anywhere else but need to be somewhere where the potential things that could go wrong can be handled safely. We should hopefully know something soon.