The Waiting Game

Today started out like any other day for us. We woke up and got ourselves ready to go to the day hospital to have blood drawn and then a clinic appointment afterward (remember we're doing Monday/ Thursday clinics.) We get there and the nurse tries to draw blood from Joaquin's PICC line and nothing comes out. Keep in mind that this is the same PICC line we've had all along and it's just been progressively pulled out each time (with the exception of the last time) he has his dressing changed.

So the nurse decides to give him a medicine to try and unblock the line. Before she did this she called the Home Pharmacy people, who change PICC line dressings, to come an change him. She administers the drug and we wait for the HP people to come. And we wait. And we wait a little more. The nurse had wanted to let the medicine sit in his PICC line for a little while - around a half an hour, so she comes back out to check it and says that the HP person is on her way down, that she just had to run upstairs to grab something. And another half an hour rolls by. At this point we have been waiting in the germ-infested day hospital and all Joaquin wants to do is crawl all over and put every little germ-infested toy in his mouth.

Mom and I take turns putting Joaquin in the stroller and wheeling him around the main floor in hopes of distracting him just a little longer while we wait. Finally she shows up and we are ushered into a room in the day hospital. The nurse takes one look at the condition of Joaquin PICC line and how far it's been pulled out and says that it's probably no good, which I don't doubt. I feel like that PICC line has just been hanging in there for dear life for quite a while now. So they decide to redress it anyway and then call the doctors to find out what they want. Of course that involves... You guessed it, waiting. Waiting for the transplant nurse (because our transplant nurse has the day off) to answer the page, waiting for the nurse to talk to the doctor, and then waiting for the transplant nurse to get back to the day hospital nurse.

So by the time they decide they want to do the chest x-ray to determine where exactly that PICC line is located, we've been waiting for about 4 hours. I'm a little upset about having yet another x-ray done on Joaquin. He's had so many and who knows exactly how numerous x-rays affects a person. But it needs to be done so that they can see where the PICC line is at and if they can salvage it.

Long story short - they can't save it and so we are probably going to have to have another PICC line put in tomorrow. That involves Joaquin being put under (yet again) general anesthesia. I don't like watching him be put under at all. But it's time for a new one. And the sad thing is that this could have been avoided if that first nurse had known what she was doing when she was changing the dressing on the PICC line in the beginning.

This weekend our close friends came out to visit, Aaron and Kelly, and we all made a trip to the beach. The coast was a bit cold, but there was a little sunshine and not many clouds. We had another "holiday" on Sunday - no blood draw. We've been holding steady with a dose of 3.6 ml twice daily of Prograf, so this may be the start of fewer blood draws and fewer clinics, which of course means that we're that much closer to going home!