Jordan
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This is my grandson, Jordan DOB: 7/15/03, twin brother to Cody who at 7 months old is now just on an apnea monitor during the night. Born at 29 weeks in Hershey, PA, 2 lb 5 oz, severe BPD. He was in NICU until October 30, home for 2 weeks and then admitted again for terrible blood gases. He was working so hard to breathe that he could not gain weight no matter how many calories he was given. He had bilateral inguinal hernia repair and was trached in December 2003. At this time, still 24 hr vent. G tube and nissan in January 04.
Jordan is now home with spotty nursing care but extraordinary care by his mother. The night we brought Jordan home, we had no nursing care and for 2 weeks I don't think mom, dad, or grandma knew if we were coming or going. Equipment has been overwhelming in their small townhouse and Jordan only settled in after a few weeks. Thankfully, twin brother is doing well but is also a baby who needs attention, sometimes when Jordan needs breathing treatments or suctioned. It's been a learning experience for me and a growing experience for my daughter (she's only 22 and these are her first babies) and as she said the other day, "I'm not afraid of anything anymore", meaning she will fight for proper care for her son even if it means stepping on physician toes, nursing agency situations, etc.
This website has been a great resource for me as far as learning everything I can about trachs and trach care as well as reading stories from other people going through similar situations. We are in a rural area and especially since we brought him home in the dead of winter, I know my daughter feels the isolation, it's hard to remember that it won't be like this forever and that there are other people dealing with it.
Thanks for bringing this information to families like ours...............Evy Vanasdalan
