Babygirl is 17.
How did this happen? She was 11 when she was diagnosed, 12 when she got her transplant. In retrospect, it feels like an eternity of driving, waiting, praying, suffering, rejoicing, walking on pins and needles. In my heart it feels like only moments ago that I comforted that tiny raging toddler after her weeping foster mom left her in our hotel room in Guatemala.
I wish it could be easier, for her sake. But for me? I could ask for a simpler life, but I couldn't ask for a better child. She is kind, she is funny, she is responsible. Despite all she goes through she finds reasons to laugh and crack wise.
(Funny Mission Trip Story: We were REALLY out in the boonies, no Dairy Queen in sight. But there was a local convenience shop that sold gas, snacks, milk, beer. It also had ice cream, milk shakes and 'blizzards.' At the end of a long, hot day we stopped there with our van for the first time. As we unloaded the team, one of the kids looked at the signage in the window of this tiny place and said, "They sell Vape supplies here?!?" Without missing a beat, Babygirl replied, "That's how you know it's QUALITY ice cream.")
School started two days sooner for her than for her peers locally. We opted, this year, to enroll her in an online school. (This is one more situation where I could wish we lived over the Pennsylvania border: PA has free online schooling available for any in-state student who needs it. NY does NOT. PA also has insurance that covers catastrophic illnesses in kids regardless of parental income. NY does not.) But for a fairly reasonable fee, we have her in a NYS accredited high school online. Because her former headache doctor felt she should attend school whether she had a headache or not, she did not get a single 10th grade credit, so we are starting that grade over. The advantage of online schooling is, however, that she can go as fast or slow as she needs to. She can 'attend' class as easily at 2 PM as at 1 AM. So if she is up to it, and remains motivated, she can gradually catch up some credit. Her hope is to graduate on time with a Regents diploma, which we would not be able to acheive with ordinary homeschooling. She's working on getting into a rhythm with the programing.
On top of this she has agreed to take care of her nephew, Squeaker, when he gets off the bus after school each day so that her sister doesn't have to pay for daycare. She is truly amazing. I am truly blessed.
DeeDee
Thursday, September 8, 2016
Friday, September 2, 2016
Doctors Are Lifesaving Idiots.....
Picking up where we left off.....
Dental infection. Antibiotics. Twice. Severe gut infection caused by dental antibiotics. Winning the gut battle with NEW antibiotics.
Except.....not.
I was given metronidazole for the C. diff, one of only two available treatments. It must be taken every eight hours for 10 days. By the fourth day the diarrhea had resolved, but the medication itself was making me so sick I could barely eat.
I left a message for my doctor: "I have so much nausea from the medication that I've lost another two pounds. I can't take anti-nausea meds because they make me to sleepy to work. I have a yeast infection, and my tongue is BURNING."
Summer makes communication difficult. My doc was out of the office, as was the nurse practitioner who initially saw me. I have all of my medical records in my married name, and although the entire front desk knows "who I REALLY am" (AKA a partner physician in disguise) when I call, the nurse and doctor who managed my message apparently did NOT.
Here is how the call back went:
Nurse: "The doctor wants you to know that you have a very serious infection and you must finish your antibiotic. He says that if you would take it with food you would have less nausea. He also wants to know where you think you have a yeast infection? And he wants me to tell you that this antibiotic does not cause yeast infections. It does, however, cause a metallic taste sometimes, and that is probably what you are feeling on your tongue."
It is a testament to my overall patience that I let this run its course. Because, really? I am a FIFTY-EIGHT year old woman, and odds are good I have had at least ONE yeast infection in my life and know EXACTLY where it is and what it feels like. PLEASE do not assume that my IQ is under 80 before you have even spoken to me. ASK if I am taking it with food, don't assume that I am doing it wrong. And hey, here's an idea - check the previous provider's note: Even if you wrong-headedly believe that THIS antibiotic cannot POSSIBLY be the cause of all this trouble, could it be the fact that it is the THIRD DAMNED ONE in less than a month???? I mean, I didn't get this very serious infection outta nowhere, did I?
Ugh.
Me: "First, let me introduce myself. My chart is in my married name but I am Dr. D. I am altogether aware of how serious this is. This is my SIXTH day of this antibiotic, not my first. I am not being a baby about the side effects, I AM taking it with what little food I can get down and I am trying to WORK and not vomit on anyone. Tell him the yeast infection is in my VAGINA, and tell him this is my THIRD antibiotic in less than two months, which he would know if he had read the last provider's note. And this is no damned 'metallic taste.' My tongue is on fire. Have him call me if he has any questions."
He called in a fourth antibiotic and some yeast medication.
I've been in practice for nearly 30 years and I don't think I have ever asked a grown womant to explain to me where she 'thought her yeast infection was located.'
I can't tell this story without every nurse in the room laughing their butt off.
Anyway.
I started the new medication, which is FOUR times daily. The nausea and burning subsided, and I actually managed to have a couple of good work days, and felt pretty well for our beach vacation. I completed a total of 14 days of treatment between the two medications and came home and went back to work.
Monday was fine.
Tuesday was...uncomfortable. Tuesday night was an up-and-down to the bathroom festival, and by Wednesday it was clear that I had not succeeded in clearing the problem. Thursday I went to my own doc (OhThankGod). In less than two days I was MUCH sicker than I had been the previous time. This time my blood work confirmed dehydration. I was sick enough that I couldn't even read. For me, that's SICK.
Cultures were repeated and were again positive for C. diff and he took me out of work for a week and restarted a second course of antibiotic #4. It was about four days before I could really clean up the work I'd left undone. And this time, instead of taking the medication four times a day whenever I remembered (I did get in four a day, but they weren't too evenly spaced), this time I have an alarm set for every 6 hours on my phone. I wake up twice at night to take them. It took the full week to feel like I was anything close to normal.
I'm cleared to return to work on Tuesday, although I'll still be on the antibiotics at that point. Pray God I don't have a third recurrence.
DeeDee
Dental infection. Antibiotics. Twice. Severe gut infection caused by dental antibiotics. Winning the gut battle with NEW antibiotics.
Except.....not.
I was given metronidazole for the C. diff, one of only two available treatments. It must be taken every eight hours for 10 days. By the fourth day the diarrhea had resolved, but the medication itself was making me so sick I could barely eat.
I left a message for my doctor: "I have so much nausea from the medication that I've lost another two pounds. I can't take anti-nausea meds because they make me to sleepy to work. I have a yeast infection, and my tongue is BURNING."
Summer makes communication difficult. My doc was out of the office, as was the nurse practitioner who initially saw me. I have all of my medical records in my married name, and although the entire front desk knows "who I REALLY am" (AKA a partner physician in disguise) when I call, the nurse and doctor who managed my message apparently did NOT.
Here is how the call back went:
Nurse: "The doctor wants you to know that you have a very serious infection and you must finish your antibiotic. He says that if you would take it with food you would have less nausea. He also wants to know where you think you have a yeast infection? And he wants me to tell you that this antibiotic does not cause yeast infections. It does, however, cause a metallic taste sometimes, and that is probably what you are feeling on your tongue."
It is a testament to my overall patience that I let this run its course. Because, really? I am a FIFTY-EIGHT year old woman, and odds are good I have had at least ONE yeast infection in my life and know EXACTLY where it is and what it feels like. PLEASE do not assume that my IQ is under 80 before you have even spoken to me. ASK if I am taking it with food, don't assume that I am doing it wrong. And hey, here's an idea - check the previous provider's note: Even if you wrong-headedly believe that THIS antibiotic cannot POSSIBLY be the cause of all this trouble, could it be the fact that it is the THIRD DAMNED ONE in less than a month???? I mean, I didn't get this very serious infection outta nowhere, did I?
Ugh.
Me: "First, let me introduce myself. My chart is in my married name but I am Dr. D. I am altogether aware of how serious this is. This is my SIXTH day of this antibiotic, not my first. I am not being a baby about the side effects, I AM taking it with what little food I can get down and I am trying to WORK and not vomit on anyone. Tell him the yeast infection is in my VAGINA, and tell him this is my THIRD antibiotic in less than two months, which he would know if he had read the last provider's note. And this is no damned 'metallic taste.' My tongue is on fire. Have him call me if he has any questions."
He called in a fourth antibiotic and some yeast medication.
I've been in practice for nearly 30 years and I don't think I have ever asked a grown womant to explain to me where she 'thought her yeast infection was located.'
I can't tell this story without every nurse in the room laughing their butt off.
Anyway.
I started the new medication, which is FOUR times daily. The nausea and burning subsided, and I actually managed to have a couple of good work days, and felt pretty well for our beach vacation. I completed a total of 14 days of treatment between the two medications and came home and went back to work.
Monday was fine.
Tuesday was...uncomfortable. Tuesday night was an up-and-down to the bathroom festival, and by Wednesday it was clear that I had not succeeded in clearing the problem. Thursday I went to my own doc (OhThankGod). In less than two days I was MUCH sicker than I had been the previous time. This time my blood work confirmed dehydration. I was sick enough that I couldn't even read. For me, that's SICK.
Cultures were repeated and were again positive for C. diff and he took me out of work for a week and restarted a second course of antibiotic #4. It was about four days before I could really clean up the work I'd left undone. And this time, instead of taking the medication four times a day whenever I remembered (I did get in four a day, but they weren't too evenly spaced), this time I have an alarm set for every 6 hours on my phone. I wake up twice at night to take them. It took the full week to feel like I was anything close to normal.
I'm cleared to return to work on Tuesday, although I'll still be on the antibiotics at that point. Pray God I don't have a third recurrence.
DeeDee
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