According to Frank, who spent Wednesday night in the Hospital with Zack, they both got plenty of rest. Zack's chemo was to start at 9:30 am ,but by lunchtime (1 pm) when I called to check in, he still had not begun. Thus started the journey to a whole new experience... for everyone!
When Zack told me, quite angrily I might add, that his chemo treatment had yet to begin, it was time for me to step in. I had finished a quick lunch and was in Moms jewelry booth checking to make sure it was in order. (it has been at least three weeks since I have been able to do so.) While fluffing the booth, I called the nurses station asking why it had not started on time, they blamed the pharmacy, the pharmacy blamed the nurses, The receptionist at the cancer center didn't understand my question, which was "if treatment is so late, does that push back the time for us to go home." Their answer: "It's up to the Doctor on call what time he goes home and if he drinks enough fluids." Okay, so I'm getting no where. I'm frustrated because I'm getting all of this double talk but still no chemo. I have only an hour until I return to work and need to get this resolved. PERIOD!! A young woman about thirty "something", walks up to me and asks "where is your son?" (of course) she had over heard my conversations (I'm not known for my subtlety). She said "I'm an internal medicine Doctor, I'm not currently practicing because of stuff like you are going through, but I would like to help if I can." Now, we all know under normal circumstances I have no problems kicking butts and taking names, but today, I'm exhausted mentally and physically is catching up quickly" I hand her my phone and she begins to call, first the pharmacy "This is Doctor Kate ..., what is the status on the chemo for Zack Fisher, 17 years old.... Oh when did that go into the .(medical term I'm not familiar with.....?,) please connect me to the nurses station in Peds." "This is Doctor Kate... I want to know if the chemo is hanging for Zack Fisher and why there was a delay of over three hours." Angrily the voice on the other end says "I'm not his nurse!"..Dr. Kate responds with a firm" I'll hold!", "oh, okay let me go and see what his nurse says." A few minutes later "His chemo is hanging, the reason for the delay was pharmacy was backed up and we just got the chemo" "oh really? pharmacy just told me you have had it for two hours, thank you very much, good bye". With this, Dr. Kate hands me back my phone and says " he has the chemo now, but no one is accepting responsibility for the delay." THIS is why I'm not practicing! I heard everything that was said (speaker phone) and it isn't until later that it hits me! This woman, whom I have never met, is not affiliated with any office, hospital or business in the area (she just moved here from SC near Columbia) was just given all of this information about my son! No one ever asked his full name, birth date, or who she was? Not one person!! Dr. Kate asked for my name and number and said "there is a reason we met today, we may not know why yet, but I'd like to think it was meant to be." I agree and so we exchange numbers. I tell her she has to go back to medicine, patients need Doctors that are strong advocates.
Knowing I may have a battle at the Hospital later, I at least feel a sense of relief that Zack has what he needs for now. I can return to work and focus on my job. I finish out my day at work and agree to meet Rhonda for dinner, grabbing something for Zack at the same time. Frank is worried that I may just need to go back to the hospital and rest. I remind him that I have been eating in my car on the way home, to the hospital or eating alone and just need an hour or so of company. He says "I know how you feel, I just wanted to make sure you don't run yourself down too much." A relaxing dinner is just what I needed. Once we finish, I run upstairs in the Hospital to Zacks room, drop off his dinner and tell him I'll be right back as I bring down the two footstools to Rhonda, who is waiting at the now locked entrance to the Hospital. (they lock the doors at 9 pm). With anticipation of leaving either Friday late or early Saturday the less I have to move all at once the better.
On my way back down the hall, I see Zack's night nurse. I start to explain what happened (of course they know I am pissed and were anticipating a conversation). What they didn't expect to hear, was how much information had been given over the phone to a total stranger. Within minutes I am surrounded by nurses including the night shift head nurse who are are listening in horror. I tell them, I'm not concerned for my sons safety, or even information about him in particular... hell I'm writing a blog!! But explain that with HIPPA laws, this was a BIG RED FLAG for them and they need to address the situation. They explained how they have a protocol to follow and this went against everything they are supposed to do and not do, especially in pediatrics! It's a fine line for me. I care about these people, they take (for the most part), very good care of Zack (and me). I really don't want anyone to get in serious trouble over this, but as an advocate for others they need to know this was unacceptable and perhaps can save them from a major incident down the road.
I was told that the head of nursing would be coming to see me tomorrow, possibly an administrator as well. I understand that we will have the same nurse, so perhaps she can help me get to the bottom of this. For now, my objective is to get my son home as soon as possible. Even with the delay in chemo yesterday, he was in good spirits and appreciated all my efforts to get it sooner. He knows I will do everything in my power, even if it means leaving at 10 pm (not my favorite thing to do) for him to wake up in his own bed. No beeping machines, no finger monitors, blood pressure cuffs, tubes coming out of his chest or peeing in a container. Just his bed surrounded by all his favorite things!
I settle in for what's left of the night and by 10:30 pm all lights are out and we are fast on our way to sleep.
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