Yes, it feels like we will never go home. It feels like hospital stay is forever, the past 5 months has been crazy... from the day you were born, till 30 mins after that, you were sent to the NICU and multiple stop breathing episodes, seizures, surgeries... the scariest one of all is for over a month, nobody could tell us if you were going to live or die the next second to 5 months and 2 days later, we finally were told that we got to go home.
When Melissa, little Nash's mom told me that she was going home on 10/1/2012, I too asked if we can go home on 10/1/2012. Little Nash and you have been our little fighter. He fought for longer as he was born about a month before you but we were in the NICU pretty much together, and then to the vent floor and OCH and leaving the hospital together. He was supposed to leave at 10am, we were supposed to leave at 10.30am. They left at 10+am... for us..... sorry, we have issues, we need to be discharged at 3pm.
Well.... have I ever expect something smooth in life after everything has happened? Lesson learnt from all of this... no jumping, stay calm. Apparently, our care coordinator did not coordinate the discharge medication and we couldn't leave yet. Besides that, Dornase, which is a specialty medication was denied by the insurance. Ok son... you apparently don't have Cystic Fibrosis (CF), so, you can't have Dornase, really??? You have been on it forever, why now you can't have it? :( So, mama had to call tons of people and yet, still not able to. Finally, they decided to discharged us without it. Cool.... I was so excited, the ambulance came... mama dressed up. I told mama, this is such a big day for mama, it's bigger than mama's wedding day, mama was so excited and couldn't sleep. Mama had to look pretty as mama is bringing mama's newborn. It's like... rewind... this is May 4th, the day you were supposed to be discharged with mama... except... mama's newborn is 17 lbs, wears a size 3 diaper with 2 bottom teeth.
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