Does it really have to be a fight against everybody?

Friday, 9/28 was a very stressful day. I’m sure more things could have gone wrong, but it felt like everything that could have gone wrong, did. We had an appointment for BJ’s chemo treatment at 0930. At 0730, BJ woke up, was very dizzy and very pale. It got worse after we checked his blood sugar, which was low to begin with. He became sweaty, and was crying and I was doing everything I knew to try to get his blood sugar up. I called in to the endocrinologist on call, and reported what was happening. We told me to do what we were already doing, but then he said if he passes out, call 911. I knew what was going on here, and remembered from EMT class that you can pass out with low blood sugar, but when he said that, this situation became even more urgent. I had to shake BJ to get him to open his eyes and to get him to drink the orange juice. After a peanut butter and banana sandwich, his sugar was up more into a normal range. He got dressed, and we headed down to the clinic. He still did not feel well, but he knew he had to go. We got there at 10:30am, I found a wheelchair, and went back to get him from the car to roll him into the clinic. In the lobby of the clinic, the social worker who I had asked 3 times for my completed FMLA paperwork met us. I thanked her for getting my paperwork in, and she proceeded to tell me (once again – the first time on my voice mail) that she legally had 14 days to get my paperwork back. This was not the day to mess with me, and I told her that I really don’t care about her 14 days. She said, well, if you needed it sooner, you should have asked. I reminded her that I had asked 3 times, and told her that I was not going to fight about this right now. She asked if the school had gotten in contact with me, and I said I had not heard a thing from them. She said she’d go work on that, and turned and walked away. That confrontation was the last thing I needed that morning. But it was just another piece of what made a rotten day. During the wait at the clinic, we needed to check BJ’s blood sugar, so he could eat lunch. I brought up again, how my glucometer was 20-25 points higher than the readings from the hospital’s meter, and that I’m sure that had a bearing on how low his sugar went that morning. BJ’s oncologist, Dr. Kaplan seemed to question that my meter was so inaccurate. (Really!?!? —I know he doesn’t know me, but that was just insulting!) I reemphasized that it was that far off the day it was given to me during the initial hospital stay. When the nurse came in to check BJ’s sugar, I asked to compare readings. Their meter read 179…mine read 202. I asked for a new one. They brought in a new meter and took the one I had. Finally! Dr. Parker (BJ’s endocrinologist), who we had just seen the day before had looked at every reading I documented since the day we came home from the hospital, and determined that we should raise (by 2 units) the insulin I give him at night. I told the nurse that if my meter is off by 20-25 points, then all those readings were higher than what BJ’s blood sugar really is. I called in to Dr. Parker’s office to let them know that the meter was definitely off, that Dr. Parker had raised BJ’s Lantus shot based on the readings in my notebook, but that those readings were higher than BJ’s blood sugar actually were, and that this morning’s reading of 72 did not fit his symptoms this morning. The woman I spoke to typed it in and said she’d have the nurse call me back. When nurse Kelly called back, she immediately started talking about the variation between meter readings, and how it’s expected that two meters would be off by 10-20%, depending on the range of the blood sugar. She would not hear me and my concerns, she chalked it up to just normal variation between meters. My concern is that his dose of insulin is based on the readings that Dr. Parker saw in my notebook, and that those readings were higher than actual. I cut the call off short, because I wasn’t getting anywhere with her. It was so completely frustrating! I have to work with two separate departments (oncology and endocrinology), I am his caretaker, I know my child, and I know what I witnessed that morning…it was awful for him to experience this, and I want to make sure that it doesn’t happen again. I felt that I had zero support from the medical staff there.We ended up being transferred over to the hospital for a blood transfusion about 4:30pm, and it was close to 7pm before the blood came and the transfusion was actually started. I was close to a breakdown. I had planned on a 2-hour trip to the clinic for what was supposed to be just an IV chemo treatment. The 2 chemo drugs take about 45 minutes to infuse, so accounting for the usual wait time for the chemo to come up from the pharmacy, I expected a 2-hour trip, tops. I expressed some dissatisfaction to the nurse navigator, and talked to her about how unprofessional the social worker had been, how ineffective the process for coming in to get chemo seemed to be, that I felt second-guessed by the doctor, that the nurse from endocrinology wouldn’t listen, and how I do have another child at home to consider. It was overwhelming. The assistant VP of the hospital came down to talk to me while we were waiting for his blood transfusion. She asked, and I told her the events leading up to my complete frustration. I want to help them, and I see improvements they could make that would help families like us that are having to go through this process. I let her listen to the voice mail that the social work left on my phone concerning her “14 days”, and she apologized for the social worker’s unprofessionalism. I suggested that for patients like BJ, whose chemo is not blood-count dependent, that the chemo is ordered from the pharmacy upon arrival into the clinic. There should be no waiting to order the chemo. It already takes a while for them to mix it and get it up to the clinic. This change in process would be a huge improvement for patients like BJ. The AVP told me that she wanted to share with me (because of my QI background), that they are working on improving their processes, She would like for me to participate in focus groups that will be created to help them improve. I told her I would be glad to, but right now was not a good time for me, that my focus needs to be on other things right now. It did make me feel better that they are working on improvements and that she took the time to listen to my concerns. It ended up that we were at the hospital for 11 1/2 hours…finally discharged at 10pm. It was an incredibly exhausting day for both of us.