The evening we arrived home and the next day following were so overwhelming for me. There were a series of issues relating to the IV meds that Elijah came home on. The hospital didn't send the order on time. The company who was suppose to deliver the meds didn't. The educator who was suppose to teach me about administration didn't do that part of the training. So, by 11pm the first night at the apartment, I questioned whether we could really do this at home. With my son's life at stake, my anxiety was running high. Far too many what ifs and insecurities of my own abilities to do this were racing through my head. We had come so far to make a mistake now. I was scared.
Thankfully, one of Elijah's home nurses came for the training on the night he was discharged (After working a 12 hour shift with Isaac!) If I hadn't had her here to work alongside of me through our first evening and next day home, I think the doubt and fear could have overtaken me. Even with two of us, we worked nonstop to get the meds schedules figured out, learn how to give drip IV's in home style, and get all of his cares done.
By Sunday, I had premeasured all of the med doses for the next day and had them labeled so that I could easily see what needed to be given when. I double and triple checked all that things that were on my mind. We organized the apartment so that the supplies were right where we needed them. By the time Mark and the kids came to visit, I was able to relax and enjoy time with the kids. Playing outside, hanging out in the apartment and doing all the things that we would have taken for granted before. It was so good for my soul...
Today, we head to the clinic for our visit outpatient visit. We will go everyday for bloodwork, infusions, transfusions or any other fusions they can think of. He has not had blood work since Friday..the longest he has gone since transplant. I will be glad to get a glimpse of what is going on that can not be seen with my eye. They say to plan on staying for 8 hours but it could be just a few hours if all is well. I am not sleeping well..can't tell if it is that I need to sleep with one ear open waiting for the next alarm to beep or if it is just that my body is not used to getting much sleep. Either way, I can get up here and not have to worry about waking the whole family...I will enjoy the late night solitude while I can.
Our new normal...it is hard, but it is good.