This is when it got worse.
So the day shift decided that there might have been a small clot that formed on the end of the needle. The treatment for this is to inject a drug called TPA into the line. Because of my background, TPA makes me very nervous. I took care of more than a few patients that received TPA to treat a clot in the heart (heart attack) and ended up having a massive brain hemorrhage. Now at the time, I am assuming that the dose of TPA for a port is significantly smaller than for a heart attack, but I am still nervous. So the day shift nurse injects the TPA, and I am watching very closely, making sure it is less than 3 ccs (the amount his port holds). We wait hours for the TPA to work, and still no blood. By this point, the nurse practitioner has arrived and she tells us that we really do not even need the blood work for discharge anyway. But now they cannot send us home with a potentially nonfunctional port. So the decision is made that we must withdraw the second needle and poke him for a third time, without numbing cream, into the same spot.
The dayshift nurse comes into the room with another nurse and a whole lot of supplies. Both nurses are asking each other questions about how they are planning to proceed. It becomes clear that neither of these nurses have ever done what they are about to do. At one point one said, “I don’t know . . . maybe you should ask ___” At this point, I decided that my previous assumption about the safety of using TPA in the port was premature because these nurses were clearly inexperienced. They set up the sterile field and I stopped them and asked them to explain what they were planning to do. They planned on taking out the needle with TPA in it, sticking him with a new needle (that should in theory be able to draw blood), then flushing the TPA that was inside his port into his bloodstream and then adding a blood thinner and pulling out the third needle. I realize that I am not an easy mother-of-the-patient because most people would not get nervous about TPA (they would not even know what it is) and would not ask so many questions. But I am who I am, and I have to speak up for my child when I have any questions or concerns. So I ask them why they are not going to draw the TPA out before they flush. There was an exchange of looks between the nurses, both got irritated and the primary nurse seemed flustered by my questions. There was a back and forth and finally I tell them that they need to call the nurse practitioner because I am not comfortable and no one is going to do anything to Nico until I am satisfied that this is being carried out properly. The nurse practitioner came, she was very understanding, we spoke at length and finally I gave the go-ahead. But when Nico realized that he is going to be stuck again, he got hysterical. So hysterical that it took four people to hold him down. He cried. I cried. It was really terrible.
We were finally allowed to go home. There was a lot of tension between the nurse and myself and the discharge was incredibly weird, but that is another long story. When I got home I was uneasy. I did not even post that we were home. Nico did not seem right and the prospect of going back to the hospital for methotrexate three more times in six weeks caused me a lot of anguish. I called the charge nurse and requested that the nurse that we were so comfortable with in the beginning of the hospital stay be assigned as our primary nurse for our future hospital stays. The charge nurse said that patient requests were not a consideration because they assigned nurses based solely on patient acuity. I told her that was a real shame because the disparity in nurses on their unit was astounding. She replied, “I know” and then explained that many nurses could not handle this type of work and the unit had a high turnover rate and a lot of new graduates working. At least she was honest about what is obvious.
Within, sixteen hours Nico had a fever and was projectile vomiting. The next morning we were back in clinic. Nico was severely dehydrated. They gave him fluid until he peed and that took 5 hours and 4 IV bags (kid-sized). I told our oncologist about our experience the last day in the hospital. He immediately ordered blood cultures (to make sure Nico’s blood was not infected) and gave Nico antibiotics. He told us that Nico’s condition warranted hospitalization, but if I felt comfortable giving him IV fluid and IV anti-nausea drugs at home, he would let us take him home on the condition that if his fever reached 101.3 we had to bring him back. I would have done anything to safely avoid the hospital, but we were back by the next morning after Nico spiked another fever. We spent another four days in the hospital getting IV antibiotics, anti-nausea drugs every three hours around the clock, and IV fluids. Nico’s counts (blood work) crashed and he was again neutropenic. When Nico’s fever finally broke on Monday, we were cleared again to go home. By this time, Nico’s vomiting turned into watery diarrhea and while I spoke to Nico’s oncology team and he leaned over his iPad, diarrhea leaked out the front of his diaper and saturated the dressing around his accessed port! Nico had to be de-accessed, cleaned, and re-accessed for a fourth time.
We still returned home on Monday, but I continued to give Nico IV fluids at night and IV antibiotics every six hours. Miserable. Neither Nico nor I slept much for the past several days and it really wore both of us out. Of course, Nico is also recovering from being injected with an incredibly toxic substance and sick, so my exhaustion is comparatively trivial. We were able to stop the antibiotics yesterday, and I am hoping that we both sleep tonight.
Nico will have another blood draw on Sunday, and if he has recovered, we go through the methotrexate all over again starting Monday. There is a mixture of pure dread and desperation to get through this phase as quickly as possible. Our oncologists are not convinced that the drop in Nico’s counts is from the chemo, but think it is entirely possible he caught a virus that suppressed his immune system on top of everything else. This possibility makes Jeff and I even more nervous about exposing Nico to other people because this event has resulted in holding a type of chemo that Nico was supposed to be receiving for the last two weeks (it is too dangerous to give it when his counts are this low).
So there it is. Even though we spent Mother's Day in the hospital, I would not say that Mother’s Day completely stunk this year. In fact it was a celebratory, fantastic, joyous Mother’s Day because we got the results of Nico’s bone marrow biopsy and his marrow looks completely normal. Now we just have to make sure it stays that way.