Joshua's Journeys #41 Mixing Business with Pleasure

I beleive a lot of times life is a preparation for what is yet to come. My fourth grade teacher taught me sign language, which I would later have to do a refresher course, I volunteered for the Special Olympics, and always had an affection for special needs children. I also have my master's degree and am a registered and licensed dietitian and the main focus of my work is with people on tube feedings: calculating their needs and making sure patients are able to tolerate them well. Before I got pregnant the very first time around, I began a new path in the population which I serve and started working in the NICU figuring out formulas and breastmilk compositions for babies. Little did I know in a few years I would use all of my experiences with Josh. There were many times in which I called upon my background to help with Joshua's care and development. One of the dietitian's at Children's Hospital paid me a huge compliment saying she thought I advocated for Josh very well and had the expertise to back up my convictions. I joined in when the doctors, nurses, dietitian and other healthcare workers were rounding on Josh and did not hesitate to speak up.

Shortly after Joshua's passing I was asked by my boss if I wanted to pick up an account in pediatrics. She stated that she knew it might be hard for me under the circumstances of losing Josh, but knew that I dove in head first and had a spot in my heart for pediatric and neonatal nutrition. I was back and forth on if I would accept the account that was a good hour plus away from home. I even talked to some of Josh's NICU nurses about the decision, how they deal with loss in the work environment and if they thought it would be appropriate for me to accept the account. I did accept the position knowing that if I let the opportunity to work with trached, vent dependent, and g-tube fed kiddos I might regret it the rest of my life. The first day I cried all the entire hour-plus drive to Harvey, IL. I was fine the entire day and was overwhelmed by the wonderful, caring nurses, and completely touched by each baby and child that I came in contact with. It was where I wanted to be. I cried the whole way home missing Josh, and still do most all days, but I am so happy to be working here.

I had to give up the account when I was on maternity leave for Jillian, and thought I wouldn't get it back. The dietitian that covered for me lives a lot closer, but she was no longer able to do the account, so this past Monday was my first visit since Jillian was born. When offered to go back again, I jumped on it, even if it meant the long drive. I received a warm welcome and return, and am so happy to be back. On Monday when I was there I was told that CBS news would be there today to do some coverage on the financial issues that a lot of facilities like this face. The only one like it in the state, the facility I work at has a capacity for 67 infants to young adult aged patients all g-tube fed, some do eat orally as well, and most all are trach or vent dependent. While I am not happy that the facility is in such a financial state ($2 million behind funding from the state), I wanted to share a clip of where I work and to bring some attention to the issue of aid for this population.

Click here to view the clip of Children's Habilitation Center.