When Todd went in for his third day of Chemo on Wednesday, January 14, 2015, they checked his blood counts again. His hemoglobin dropped from 8.0 on Monday to 7.9 on Wednesday. So, he needed a transfusion.
But the nurses and staff can't seem to get the ball rolling. First, they stalled collecting blood to have his type and screen done to order blood, because they say this can't be done at the Kettering location. So, he had to drive to Miami Valley South to have it drawn. Apparently, only a nurse is allowed to draw blood from his Hickman Catheter Port. The phlebotomists are not allowed to touch it. They can only draw from his arm. So, this means he has had to sit and wait for a nurse, when one is done with their own patient to come draw his blood. This has taken anywhere from 30 minutes to over an hour.
After waiting, a phlebotomist came up and asked him if he just wanted stuck in the arm and he said yes. He was tired of waiting. So, they got the sample and told him it could take up to an hour to get the results. He was tired and so he told them just to arrange to have the transfusion done the next day. They made an appointment for him at the Main Campus of Miami Valley Hospital in Dayton for the next afternoon.
He shows up there the next day and they can't get the results from the type and screen done at their South location (they have different computer systems). So, he waits an hour for them to get the type and screen. Then they have to order the blood. It always takes about 1 1/2 hours per unit of blood and he always gets 2 units. So, needless to say it was a long day.
Today, Monday, January 20, 2015, he purposely goes to the Cancer Center location at Miami Valley South, as arranged at his last appointment with his local oncologist, so that he can get his blood drawn there on non-chemo days. If he needs a transfusion, he can have it done there (supposedly). When he gets there, there is NO standing order, or orders of any kind, for him to get his blood work done! So, he has to wait til they call the doctor and get orders. Then, there is no nurse available to take blood from his Hickman again, so he waits. After getting frustrated, he allows them to stick him in his arm again, just to get the blood sample. Then, they say it is going to take another hour to get the results and that is with it labeled "STAT." Feeling pretty confident he doesn't need a transfusion, he leaves and tells them to call him with the results and if he needs to come back he will.
Hours later, they call. Instead of giving him his CBC results, they just said he whites were low at .7 and that's all. So, he calls back asking for the rest of the numbers; of course he can't get anyone to help him. He has to leave a message for someone to call him back.
Late in the day, someone from CompuNet from Miami Valley South calls the house and says that they finally got a standing order for him to have blood work done there from here on out, but that he will have to fill out all the paperwork over again! I don't know if he wants to go back there if it takes 1 hour STAT to get blood work results. At the Kettering location it takes 10 minutes and at the Cleveland Clinic it takes about 15-20 minutes. So, I ask her why can't they get someone to take it from his Hickman, and she informs me of the policy that only a nurse can do it. She said, "He has good veins, they can just stick him." And, trying to keep my cool, say, "No, not really, not when his platelets are low, he doesn't need to be stuck! It could cause him to bleed and bruise!" And she says, "Yes, I guess your right. I hadn't thought of that!" Ugh...
Between waiting on orders, waiting on nurses to draw blood, waiting on results, waiting to get a type and screen, and waiting to get the type and screen results and getting blood ordered, to actually getting the transfusion, Todd is just tired of waiting. He doesn't have much energy or patience right now. Who would? No patient should have to go through this much confusion and waiting!
It looks like I will be calling the local oncologist's office to let the doctor know that not much has been going according to his arrangements. I think he needs to know that something is wrong with the process, which should obviously function more smoothly than it does.
He finally got a call back from another nurse with the other results: His Hemoglobin is a 9.3, well above an 8; no transfusion needed. His Platelets have dropped to 67,000, but well above 10,000; no transfusion needed. But, his other counts are problematic: his whites dropped to .7 or 700 and his ANCs to .3 which makes him Neutropenic (anything below .5), which means new restrictions on diet, foods, environment, getting out, etc. These very low numbers put him at HIGH RISK for contracting infections and little immunity to fight them. Under other circumstances, they could give him infusions of Neupogen to help build up his white cells, but unfortunately, they cannot do this when there are cancer cells present, because it could cause the cancer cells to multiply too.
It is normal for his white counts to drop after finishing a round of Vidaza, and they will usually begin to bounce back after a week or so. That being said, its not good that they are this low. We all are going to have to be careful in the meantime.
I'm glad he has an appointment back at the Cleveland Clinic with his BMT doctor on Wednesday, so we can ask if he needs to go back on his antibiotics. We are not sure what this visit will entail except for the routine CBC and seeing the doctor. I'm sure they will take blood for a chimerism study and we will discuss whether he will do another round of Vidaza before the stem cell transplant. At some point, I'm sure his BMT doctor will schedule another bone marrow biopsy to check the progression or regression of the disease. He needs his blasts cells to be as close to 0-1 as possible before beginning the stem cell transplant.
I will post more after Wednesday. Thanks again for caring enough to read this blog and to pray for Todd.
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