I can remembered many of times calling the 24 hour hotline in the middle of the night when Beckett was sick and being connected with Dr. Gratney on the other end of the line. She was always calm and cool and gave us ventilator adjustments and inhaler dosing to help Beckett get through the night and remain at home instead of a trip to the ER and admission to the ICU. In addition, and why Dr. Gratney will always hold a very special place in my heart, Dr. Gratney willing took on our insurance company in the fight to provide Beckett with in-home nursing care when our insurance company denied our claims. She provided them with industry practices and research for trach children at home, she attended conference calls with the case management company and in the end was right there on the front lines with me advocating for what we knew was needed not just for Beckett, but for any kids like Beckett which might need in-home nursing care in the future. And in the end....we won! Our insurance company now offers in-home nursing care for trach and ventilator dependent children who are able to remain at home. Dr. Gratney was supportive in our decision to seek a second opinion at CHOP for Beckett's airway reconstruction. She helped to ensure that we had everything we needed with records, getting appointments for testing prior to a surgery, and acted as a sounding board for any questions and concerns I wanted to validate.
|Waiting to see the doctor|
|Dr. Gratney in the white coat and Dr. Lachica in the green shirt|
Yesterdays appointment was bitter-sweet. I am over joyed that Beckett is well enough that we no longer need to go to CMH, but I will miss the doctors and knowing that at anytime a day I could call their emergency number and be connected to the experts who have known Beckett nearly his entire life. After the clinic appointment, both Dr. Gratney and Dr. Lachica had sometime before their next patient arrived and so they took Beckett on a little tour :)
First we went to the offices which house many of the NICU doctors and staff. It was so great to see many of the neonatologist who took care of Beckett when he was in-patent at CMH. They couldn't believe how great Beckett looked and I could see the reward on their face of one once really sick baby boy now being a complete healthy and happy toddler. Next we went to the actual NICU floor. Upon entering the NICU tears filled my eyes. I had not been back to the NICU since we were discharged and something about the lights and the smell brought back very raw memories of many times before when I walked through those secure doors...exhausted, emotionally drained and many times hopeless. We walked through the "A Pod" which was where Beckett's bed was. A5 and A3 to be exact. It looked the same as did many of the nurses who also couldn't believe how great Beckett looked and what a doll he was. So many of them made the comment that it meant SO much that we came back to visit and they never get to see the end result and how these once tiny babies end up happy and healthy kids. I think it's safe to say Beckett was the sunshine in quite a few peoples day yesterday.
Finally I cannot complete this post without posting the pictures below and telling you about Tracy. Tracy was a NICU nurse at St. Luke's Hospital where I delivered Beckett. She was actually at my delivery and was took care of Beckett in the first minutes of his life and for the first 4-days in the NICU post birth. She was also there the first time we tried to extubate Beckett at St. Luke's (prior to a trach) when Beckett coded. She took care of Beckett multiple times in those early days when he was so sick. And when we were transferred to CMH she came to visits Beckett and us. She was one of the truly amazing nurses we meet along this journey. Well shortly after we were transferred to CMH, Tracy went back to school to become and nurse practitioner at CMH which is where she is today. Yesterday, on our last day at CMH we saw Tracy, again coming full circle on this journey.
|January 2, 2011 the day Beckett was born. Tracy helping me listed to Beckett's lungs.|
|At St. Luke's post an unsuccessful extubation attempt. Tracy is holding on Beckett's oxygen mask.|
|At CMH hospital yesterday :)|