Hello Everyone,
First off all, I apologize for not posting for the past few weeks. We did not have internet in the hospital, and by the time I got home in the evening it was usually pretty late, so I would go strait to bed to do it all over again the next day. So this post may be quite long... It has taken me 3 days just to type it!
Jon ended his 16 day hospital stay when he came home from the hospital on Sunday afternoon during the Raven's game. He started his Sunday watching all the game day pre-shows. He was able to see the beginning of the game while waiting to be discharged. We were ready to leave around the 3rd quarter. We got all of Jon's stuff loaded up in the car, and then he was brought down. Thank goodness 98 rock plays the game, and we were able to listen to it the whole ride home. We arrived safely, and Jon got reacquainted with his recliner and then checked out his new bed in the living room. He saw last few plays of the game once he got settled. Once we got everything situated, Jon rested while I put things away and tried to get a little organized.
The rest of the evening was pretty hectic. We had to figure out medicines, as well as meet with a nurse. On top of all this, we had to make sure Jon was comfortable. His mom stayed for a while to help me with everything, and it was very nice to have a helping hand. After a while, we heard from Jon's home nurse when she let us know she was on her way. I was pretty nervous because she was going to show me how to hook Jon up to his TPN (Total Parenteral Nutrition) through his Picc line. She arrived with quite a few boxes and got right to business, walking me through mixing up his "steak and eggs in a bag." There were a lot of different steps to remember. I felt okay doing it with a nurse but was even more nervous once she left and I realized I was on my own to unhook him in the morning. I tried not to freak myself out and focus on the steps in my head.
Once the TPN was all hooked up I went back to the kitchen started walking myself through it in my head to calm my nerves. I sat down for a few minutes until it was time for Jon's premeds. These are the meds that Jon takes an hour before the Zelboraf medication. These include anti nausea meds and Aleve to help him stay comfortable. We were able to get through the first evening and night. I slept on the couch so I could be near him in case he needed me during the night. The night went well, and we woke up early to unhook the TPN. I started to unhook the TPN and realized the one line was clogged, so we called the nurse. I continued to unhook the line with the TPN and accidentally squirted Jon a little in the face when I unhooked it! I tried not to laugh but couldn't help it. The clog was the only issue I had that morning and the nurse that was coming in the afternoon was going to try to fix it. We continued the daily routine of TPN, Premeds, and Zelboraf and hoped we could get the line figured out later. Then I took a much needed nap (any one who knows me knows I hate naps!). I was so worried about Jon the night before I woke up anytime he moved. I think my body need a little more sleep.
We received many different phone calls that day from all the different people that were making appointments to see Jon this week. It was extremely confusing to figure out who everyone was and what they were planning on doing. We had different nurses, as well as a physical therapist and an occupational therapist. As the day went on, I continued to help Jon do whatever he needed and get him whatever he needed.
The nurse came that afternoon and went over paperwork but didn't seem too worried about the clogged line, Jon joked with her a little, saying that was all he wanted her to do. He was a little worried that she wouldn't be able to do it. Unfortunately, it was too big of a clot for her to fix without medicine. For the remainder of the evening, we did our best to figure out a way to get the medicine to our house. No such luck. Dr. Miller said to come back to St. Agnes where they would take care of it. Jon was not happy about having to make that trip, but he does whatever needs to be done without complaining. After the news about having to go to the hospital in the morning, I started preparing Jon's TPN and got him hooked up with the supervision of the nurse. After starting the pump, I did the normal night meds, and then we watched TV till we went to bed.
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