To Vandy...and home!!

Where I left off last time, I had just held my baby doll for the first time. We stayed there at Baptist for another couple of days. During that time, we were presented with kind of a crossroads. There were two offers put in front of us. There was a doctor at Vandy that had a suggested treatment that was supposedly in a very new phase that he thought might bring Will some relief. The other option was to be released on Hospice care.

We put a lot of hope in what we were offered at Vandy, but those days were not what we bargained for once we got there. The doctor, once seeing Will, back tracked on all his promises. He wasn't willing to try anything. He was extremely discouraging. His partner went as far as to tell my mother and mother-in-law to essentially talk some since into me and Jason and have us pull the plug on Will and our hope. We lost all of the progress we had made at Baptist and weren't happy there at all.

My biggest frustration to this day, is that there was a doctor in this very hospital with many OI patients that were having tremendous results with a completely different treatment. I was hearing how this was so rare and there was no one that could guide me and there were no other families like us, and just a few floors away in the hospital sat those families and that doctor. It would be over two months later until I made this discovery, all without the help of any of these doom doctors.

Another reason that I hold a lot of hostility for this time and this doctor team, no lie, once I had been home with Will for a few months, I received a phone call from this doctor. He started as someone that wanted to check in, make sure that I had received my DNA results that confirmed it was Type II, but before that conversation was over, his true intentions came to light. This phone call was to see if my child was still alive. When he discovered, we were still at our home with him and he was thriving, the shock in his voice was unable for him to hide. This man who had told me to pull the plug, was in utter shock to find my child still alive and I was once again offended by this man calling me to see if my child was alive!

Once we made the decision to take him home, there was a lot more to come along than a release from the hospital. We had to learn how to work oxygen machines, how to change out feeding tubes, how to get him out of a hospital bed and travel across town...there are not new parent classes for what we encountered next.

It wasn't until that day that I learned there was such thing as a "car bed". This is a car seat where the child actually lays in a bed like seat. I also learned that day how many bumps were in the road between my house and the hospital. Jason and I drove with the flashers barely breaking 15 mph home, because I knew that one simple fender bender would be more than my child could sustain.

At our home, there was an amazing team waiting on us. The Hospice nurse, social worker, and the medical supply guy were all there ready to help us in the house and with our, "okay, what now" moment.

We put Will in the cradle that Jason's grandfather had made in our bedroom. Other than that cradle, there was a box spring, mattress, and oxygen machine. We quickly brought in a rocking chair, the one that Jason had been rocked in as a baby by his grandmother.


There were unpainted doors hung and no furniture had been purchased since our bedroom suite was destroyed in the flood. There was no pretty homecoming into this perfectly ready home for this new baby. There were two terrified parents in a half empty home scared to death about what we had just taken on. All we knew was that home meant, no visitation hours, no negative attitudes. Our child was surrounded in love and prayers by not just us but every member of our family and friends that came through that hall. We didn't know how long we would have at home, but he was there and we were ready to make memories of seeing our child in our home and outside of the beeping halls of a hospital.

There were boxes of books brought in, where we would sit and rock looking at this sweet baby boy and read every book again and again to him.

We eventually grew in courage on what we could do with him and what our life could look like even in the walls of our bedroom and our home. But those initial days, we all just adjusted and tried to catch our breath. Our baby was home. This was something so many had said wouldn't happen. We knew God had allowed us to bring him home and that there is power in being surrounded by people with faith...faith in God, in Will, in me and Jason.

This trip home wouldn't have been possible or even imaginable by us if it hadn't been for our amazing hospice team. The group of ladies that surrounded us are amazing women who I think of often. They sat with me during some of the longest days of my life. They were there for my child, but they were there for me and Jason as well. I will always hold a very special place in my heart for the people that give their lives to helping others during such dark days, and the ones that take on that tasks with families of sick children are truly angels on this Earth.