All Gary and Brenda Lee of Cheektowaga want is for their baby boy Logan to go home for the first time in his life. Logan was born on Nov. 28, 2017 and has been in hospitals ever since. His family had a glimpse of hope recently when he became well enough to go home, but that glimpse was short lived as they were told there is a shortage of home care nurses available to help Logan, who is trach dependent. Here his father, Gary, shares their story.
“When my wife was pregnant with Logan, we found out he had a birth defect called CDH(Congenital Diaphragmatic Hernia), it’s basically a hole in your diaphragm and because of different pressures between your stomach cavity and chest cavity, your stomach organs start moving into your chest cavity. This happens 1 in 2500 births. The severity differs greatly. Logan’s was severe.
Our OB told us we should deliver at the Philadelphia Children’s Hospital because they are experts on this. So we moved down temporarily thinking it would be about three months. Logan’s case was very severe and three times during his jounrey they told us that he probably would not make it. But he fought on and thrived eventually.
After three months my wife had to return to work. She would travel by small airplanes (four seaters) back and forth to Buffalo every week. I stayed in Philadelphia the whole time.
Logan has had a few surgeries and procedures. He has a trach that he will keep for a few years while his lungs grow and strengthen. After 12 months he was well enough to travel back home to Buffalo, so they medically transported him to Oishei right before Christmas.
He is now ready to come home, but is not allowed to come home unless he has at least 16 hours of in home nursing coverage because he has a trach. The medical staff has informed us that there is a nursing shortage here and it could take weeks to a year to get coverage. Meanwhile Logan would have to stay in the ICU or a nursing home until he has the coverage. As you can imagine, it’s terribly frustrating to go on your child’s 13-month journey and he gets well enough to be home…to now find out he could be delayed months because of a nursing shortage. These are important developmental times for a baby/toddler… to be stuck in a hospital is very frustrating.
I’m sharing our story because maybe it could help get nursing coverage for us and other sick children in the hospital. We’ve just learned that it might be easier to hire private nurses instead of through an agency. We are trying to learn how to do that and if that is a better route.“
If you know of a nurse who might be able to help, message the #LoganStrong Facebook page or if you would like to make a donation to help the Lee family, you may do so here: www.gofundme.com/loganstrongjourney
