Dear Jared...the END.........

I will never forget the day you left us….just to even think about it hurts just as much as the day it happened. Hopefully, as time goes by, it’ll be less painful.
It all started because we brought a new nursing agency into our home. Bayada always provided you with the best qualified nurses. The reason that we brought Southeastern Healthcare here was because you had 2 primary nurses, 1 of which moved away to Canada and the other nurse took over covering most of the days. Well it was now time for this nurse to go on her vacation leave for 3 weeks, which she does every year, but there usually is always another nurse here to cover her shifts while this nurse was away. This time, we were told by Bayada that your nurse was moving within a year and they didn’t have another nurse to cover your case. They suggested that we look into getting another nursing agency to cover the days while they covered the nights. One of your night nurses worked for Keystone Mercy also, so we decided to get her recommendation on what nursing agencies to look into. We had 2 or 3 nursing agency supervisors come out to the house to meet you and go over your chart. Well it came down to 2, either Maxim or Southeastern. We chose Southeastern because we didn’t want to go with Maxim because they just ended a lawsuit or something.
We called Southeastern to let them know that we had chosen them. They told us that they had a nurse who really wanted to work with you fulltime during the week. They said she was a really good nurse who was trach and ventilator experienced. They said she could start right away if we could just orient her to the case because Bayada wouldn’t do it because of liability issues if something happened.
Well, the night before the nurse was going to orient, I ended up going to the hospital, so Daddy had to orient her to the case. He went over a few things with her and she told him she’d be alright until he got back from the hospital. Over the next few days and 2 ½ months she got to know you, she even took you to summer school.
Okay Jared, now I’m going to fight myself to talk about what happened on Wednesday, September 2nd.
I just want you to know that I was NEVER good with any of your “emergency situations.” I had always tended to “shut down” before thinking straight. Most of the time, when your trach came out, we (I or Daddy or the nurses) popped it right back in and you were fine, just like it was nothing.
Well, anyway, I came downstairs with your brothers that day somewhere around 11am. I came into your room to say good morning. The nurse was working with you at your bedside. She had your wheelchair pulled up next to your bed, because she was getting ready to take you out into the living room. I went into the kitchen to make breakfast for your brothers and myself. While I was making breakfast, I turned around and looked over at you and you were fussing a little and I just thought it was because she was messing with you. A few minutes later, she got you in your wheelchair and then I heard her say, “Jared, you better not be doing what I think you’re doing.” She told me she thought he might have had a bowel movement. She pulled you forward and looked in your pants and said, “No, he didn’t, I guess he passed gas.” She, then, took you into the living room while I continued getting done in the kitchen. I’m not sure when I came into the living room, whether it was 5, 10 or 15 minutes later, but I came in and sat down at the table with my breakfast (I remember picking a piece of bacon up and putting it in my mouth) and I looked over at you and I screamed “Karen, he’s blue!” but you were past that, you were actually white as a ghost staring straight ahead, your eyes not moving. You go from looking blue to pale white pretty quickly. She was standing behind your wheelchair messing with the power cords or something. She then, threw down what she was doing, reached around you and said, “Oh shit Karen, he’s decannulated” (meaning your trach was out), and then she said, “Alright I got it…it’s in.”
Then a few seconds later said, “Wait a minute, it’s not in…it’s still out. Go get another trach, Karen.” At this time I was freaking out because I had no idea how long you were decannulated. I couldn’t see a pulse-ox to see how far gone you were. I grabbed a trach from your room and ran back in with it and she again said, “Okay, I think I got it in” and I screamed,
“No Karen, he needs oxygen, we have to get him back to his bed.” She started grabbing for the portable one on your wheelchair but we couldn’t get to the ambu bag because the wires were all tangled up. At that time, (even before) one of us should have picked you up out of your wheelchair and put you back in your bed) but we didn’t because for one, your wheelchair was wedged between the wall and the recliner and two, there were Legos and toys that the baby was playing with all over the floor and I was kicking them out of the way to move your chair. By the time we got you into your room to get to the oxygen tank, the nurse yelled “Call 911.” I called 911 and then I called Daddy to come home quickly (All I said was it was you and he sped home.) I ran back to your room and she was pumping oxygen into you but it wasn’t doing anything for you, you needed help. A minute or two later Daddy walked in and threw you in your bed and started CPR (Daddy got your heart started back up) and then the ambulance team arrived and they gave you some kind of medicine to keep your heart going or something like that. A cop came in and saw me and Logan crying and he told me to go upstairs with the boys. Well you left us that day, but they brought you back to life, however you were out of oxygen for a long time. They took you to the hospital (Fitzgerald Mercy Hospital) and later you were transferred to Dupont, but you never did pull through, you ended up brain dead. A week later your body started shutting down and we had to let you go. We did the most PAINFUL thing ever in our lives….we pulled your lifeline. I had to walk out of the room and Daddy held you in his arms and he watched you slowly slip away…..he watched you DIE……and then you were gone….FOREVER. We walked out of that hospital for the first time knowing it was the last day of your life. Goodbye Jared……………………………….