At-Home Nurses

So sweet...the boys were just sitting watching TV like this

Well, today was our first official day of getting blood draws from home and saving us a trip to UCLA. As it turns out, we probably could have been there and back before this home nurse came. Ugh! First of all, one of Carter’s oral meds is Prograf which all transplant recipients take at the same time twice a day (usually around 8am and 8pm). This maintains the anti-rejection drug in the body at the same level. We had been told by a nurse in the hospital that when they draw blood to check his Prograf level in the morning, he cannot have received the med that morning or eaten before. So, the past few visits up to UCLA we have been holding back food from Carter and not eating ourselves because we didn’t want to torture him until after they drew his blood. We’re so glad we found out today that this is not the case at all. Carter can eat before they do a blood draw, and this is how we found out…

Matt and I were surprised our at-home nurse never called last night to confirm he’d be at our house first thing in the morning. I had said to him about five times last week, “See you sometime between 7 and 8am on Monday.” I explained to him Carter couldn’t eat breakfast until after they drew his blood, and he must take his Prograf between 8-8:30am. Well, we were ready for the nurse at 7am, and finally at 8:30am began to worry. We called the company who arranges the nurses and it was their answering service, so we left a message for someone to call us. We called the at-home nurse’s cell phone number and left a message. Then, we called our transplant coordinator at UCLA to let her know what was going on. She said she’d call the company and we could wait until 9:15ish to give the Prograf. The company calls back and says our nurse is on vacation, but another nurse would be coming from L.A. Our nurse never mentioned anything to us last week that he wouldn’t be around, but at least someone was coming. Well, the new nurse calls and says she’ll be at our house in 45 minutes, depending on traffic. We called UCLA again to let them know Carter would be getting his Prograf even later and now we can’t feed him breakfast until 10ish?! Our transplant coordinator was so confused and said we could absolutely feed Carter before his blood draw. So, Bennett, Carter and I sat down to eat breakfast at 9:45am. Bennett thought it was lunchtime! We had been up for 3.5 hours at this point. The nurse arrived at 10:10ish frazzled and had to call someone to see exactly which vials we were drawing blood for, etc. Halfway through, she unscrewed the cap at the end of his central line and asked if we keep this on. Considering this line has direct access to Carter’s bloodstream, YES, the cap stays on. This is Nursing 101. She finally drew Carter’s blood around 10:25am and dripped blood on Carter, the floor, and the dining table. Carter didn’t get his Prograf until 10:30am, and I called our transplant coordinator to let her know and later explained the situation with the nurse. Matt called the company this afternoon to voice his concerns to the supervisor about the day’s events and let them know our expectations for care are much higher. Matt had a good point. He said, “In my job, I’m not allowed to show up to a meeting hours late and throw papers all over the place. They need to be professional, especially when they are involved in our son’s health concerns.”

There is enough we have to worry about in the care for Carter, it is difficult to rely on other people…especially when they aren’t holding up their end. Hopefully, it all worked out. We didn’t get the Prograf results this afternoon, but all his other levels came in. His liver levels are the best they’ve been! Hoorah!