Tuesday, March 18, 2008

Tuesday morning

Greg has flown to California. He arrives at the hospital at 5:30am this morning. Except for the airline losing his bag (in it most of the $300 pills), he is doing well. At 7:30am, just before he is wheeled into the OR, he calls me. The doctor there has told him that oral vancomycin is useless. It only works in the gut. It does not get into the blood. He wants me to call the doctor who prescribed it and get it sorted out.

I call back the practice and ask them to page the doctor. They say she’ll get back to me. Ten minutes later the phone rings. It is yet again ANOTHER doctor. From my count, this is the 13th doctor we have talked to about this. “So, tell me the story,” he says. I can’t believe it!

“This is the deal,” I say while trying to get the kids out the door for school, ”My husband is being wheeled into the OR in California and he just found out he is on the wrong antibiotic, that the one he is on is ineffective. I want you to consult with an infectious disease expert and find out what antibiotic he should be on and get that antibiotic to my husband. He is at Stanford Hospital under the care of Dr. Jeffrey Norton.”

He asks me if I have the phone number at Stanford. I don’t, but I tell him that he could look it up on the internet, that it is a very well-known hospital. I give him Greg’s cell phone number and my mom’s cell phone number, they’re both at the hospital I tell him.

I am so furious! I don’t want this to ruin my day. I have my make-up ski lesson today. My ride comes in 5 minutes. I don’t want their mess up to impact that as well. I don't want to sit home angry and worried all day.

I think back. It was something I didn’t question, I didn’t double check, and that was wrong. Always question, always double check, do your own research. This is so fundamental to getting good health-care these days. I was asleep on the job on this one. I just so wanted it to be simple.

Signs I had that the antibiotic was wrong:

The ER doctors ALWAYS consulted with infectious disease specialist before using any antibiotic.

The ER doctors talked (to each other, I overheard) about going onto two oral antibiotics.

My mom had IV vancomycin and when she switched to orals it was a different antibiotic.

There was no evidence that the family doctor also had expertise in infectious disease.

The Target pharmacy didn’t carry it because it is a seldom-used drug.

Sunday morning I had a sudden flash that maybe it was too simple, the oral vancomycin might not be right. Before I called the doctor to double check, I reassured myself that of course it was right, it was the same medication, it seemed so consistent.


Cathy picks me up and we drive up to El Dora. I vent the entire way.

Sunday, March 16, 2008

The new plan

The new (again!) doctor presents us with a simple plan. Greg wants to leave for California on Monday night. So, on Sunday we’ll start the oral vancomycin to give it a 24-hour trial before he sets off. We’ll keep up with the IVs, but with home administration all day on Saturday.

We like her, this new doctor, we are thinking we’ll have two or three “regular” doctors, maybe that is the way to beat the system and at least have some continuity of care.

Saturday morning all goes well with the home care. This is working, except for a minor blip when I flush his IV and realize that I got a little air into his vein. Instant death like in the movies? I call the nurse and she assures me this is okay.

Saturday afternoon I go to the ballet with the boys and stop to pick up the prescription for the oral vancomycin at Target. They don’t have it, so the pharmacist calls around and we can get it at King Soopers.

I pick it up, but am a bit shocked by the price: $300! For 10 pills. Oh well, they said it was powerful stuff. If it works, it’s worth it.

Saturday night, all goes well again with the IV at home. After he is done we gleefully remove the IV ports in his arm.

Sunday we stay home, no one comes to administer anything, we have no doctor’s appointments, Greg takes one pill in the morning and is done with it. We are normal people again!

Friday, March 14, 2008

Day four

It is now Friday, and we are becoming quite the regulars in the emergency department. Last night we received our first good news: the doctor looked at Greg’s leg and declared that he was not concerned. He saw that it was improving and felt it would improve at an increasingly rapid rate. Not that we could stop the IV antibiotics, but we were moving in the right direction.

Did I say something before about graduating to oral antibiotics? That still seems to be off in the future. Apparently you need to be sort of gradually weaned off the IV onto the pills. They don’t like to take chances. We are now hoping that by the end of the weekend we’ll be weaning off the IV.

The good news is that home health care has now been arranged to start Saturday morning at the house. Surprisingly, it’s cheaper to have someone come to your house than for you to go to the ER. The downside is that home health care won’t come after 8pm. We have been at the hospital since before 10 this morning and this dose (each dose now takes a full two hours to administer, Greg receives the benadryl in advance, every time, so gets incredibly groggy and can’t speak up for himself and can’t drive, requiring both of us to be here) is scheduled to be finished at about 3pm. It’s been a long day. Anyway, as the doses are supposed to come every 12 hours, 8pm is much too soon to begin the next dose.

So, the bad news is that we will be coming back to the ER tonight around midnight for what I sincerely hope is our last visit. The kids spent the night last night at the neighbors since we were in the ER from 5pm to past 10pm (and they were up at 5:30am when we dropped them off at the neighbors for the morning dose). I haven’t been able to regularly pick them up from school. Someone else will have to pick them up again today. We call Felicity about tonight and she plans to come and sleep over while we spend who knows how long in the ER on a rollicking Friday night.

It’s great to see Fe but I wish I could be more of a host. I am feeling exhausted. Up at 5am, 8hrs a day in the ER, in bed at 10 or 11. Tonight it will be get up again at 11:30. I would love to stay up and hang out with her, but think I should sleep until 11:30 instead. We have dinner around 7pm and at 8 I am ready to go to bed when Greg points out that the IV antibiotics for the weekend’s doses have yet to be delivered. I call to find out what the scoop on that is. The good news is that they will still be delivered, the bad news is that the driver won’t be able to get here until 10pm and that we have to sign for them. No problem, Fe can sign for them. But no, it has to be one of the “insureds” who signs for them. Why is it that the meds can be delivered at 10pm but no one can come administer them and we have to go to the ER anyway? Uggh, we have definitely moved now from the wait-and-see phase to a new phase where things are improving, but getting really annoying: the pain-in-the-butt phase.

So it looks like bed at 8, up again at 10, then to the ER again from 11:30 to 3. Then a doctor’s appointment at 9am with his regular doctor (who will be supervising the home care). I am realizing that the caregiver has to be extra careful to take care of themselves. Between all these appointments and the kid’s needs and schedules, I haven’t had much time to rest.

Several extremely annoying (to me) things then happen:

We were under the impression we would see Greg’s regular doctor on Friday morning at 9:30. Nope, the appointment was for Saturday, a fact that was obvious to the scheduler (as the doctor is not in on Friday or Sunday), but news to us. When we asked for an appointment on Friday, then were told the Doctor was not in on Friday or Sunday, then told to wait, then asked if we would like to come in at 9, 9:15, or 9:30, we didn’t realized she was talking about Saturday. That would have been a nice detail to confirm.

The ER does not have the medication ready on Friday night at midnight, even though I asked the nurse about 4 times that afternoon if it would be ready and she reassured me when we left that it was ready and waiting for our return that night, saving us about an hour of waiting. When we get to the ER, the new nurse can’t find it and has to reorder it. It only takes about 20 minutes this time, but so unnecessary! “If only we knew you were coming,” she says. They KNEW we were coming, someone blew it.

We return to our doctor’s appointment on Saturday, ready to finally graduate from the ER, wean off the IV antibiotics, and have someone––one person––who knows the whole history––follow the case from now on, only to be told that Greg’s regular doctor is out. Again. I am a weeping mess by this point. Another mess up. She is sick, but still, we have to start fresh yet again with a new person. Maybe we should have just seen this person on Friday in the first place. What is the value of a regular physician? When the chips are down, you really want to know there is someone there you can rely on. It’s not to be.

But on the positive side, things are looking up.

Thursday, March 13, 2008

The next chapter: Red Man

It’s 24 hours later, Greg is ready for his fourth dose of IV antibiotics, the one where they decide if he can graduate. It’s 2pm, and if all goes well, it will take less than an hour. If all doesn’t go well, I want to be there, so we go together and worry about who will pick up the kids at 3pm later. He’s a regular at the ER now.

The doctor comes in, “So what, is this your second dose? Third?” “Uh no, this is my fourth.” The doctor is not pleased. It’s another call to the infectious disease specialist for a recommendation. Another hour of waiting.

The recommendation is to go for the big guns, vancomycin, the drug that is used for MRSA, the drug-resistant variety of staph (even though it is likely this infection is strep, but only way to know is to try different drugs until one works since there is nothing to culture). This drug requires a specially timed pump and it will take one hour to go in. We call to make alternate arrangements for the kids. Easy, given our wonderful network of friends. Rees has band rehearsal ("The Hooded Brothers," more on that another time) and Kadin will go to Samuel’s house instead of Samuel coming over to ours. We’re good ‘til 5pm.

In 24hrs again, we’ll know if he can graduate to oral antibiotics.

I watch the ml dripping in on the timed pump. Out of 250 ml, it hits 125ml. Half-way there. Every drop fighting those nasty bacteria. Greg starts itching his head. Lice? I don’t think so. “I’m going to let someone know,” I say. “It’ll go away,” he says. It doesn’t. He looks flushed. I tell the nurse. She comes in, stops the pump, says it is a common reaction called, appropriately enough, “Red man.”

So it’s a shot of benadryl, a dose of pepsid, and a wait of another half-hour and then we’ll try again, but twice as slow as before. We’re here for the long haul tonight. I take Mona up on her generous offer to watch and feed the kids after 5pm. Doctor really wants this drug to work. We really want this drug to work. It seems it’s one thing after another.

Oh yeah, and did I mention that Greg is scheduled for surgery next week in California? Behind all of this there has been a blood chemistry imbalance caused by an over-active parathyroid. This wayward gland (one of four small glands located on the thyroid) is telling his body to put too much calcium in his blood. Symptoms are negligible, but can include fatigue and confusion. His PHT (Parathyroid Hormone levels) are about three times higher than normal. His bone density about 89% of normal. His urinary calcium is normal, so his kidneys have been working overtime to keep up with that.

His body is fighting a blood imbalance, eczema, second-degree burns, strep throat, and a raging infection in his leg, and he is walking and talking and doesn’t even break a fever.

My theory is that once his blood chemistry goes back to normal, he’ll have the full repertoire of resources to fight everything else off. I have been counting the days until his surgery, thinking that will be the beginning of the end. The reason he is having the surgery in California is that there is no one who does the minimally-invasive parathyroidectomy surgery (that not only has fewer side effects but also has better cure rates) in Colorado. The doctor in California not only does the minimally invasive version, but does over 100 of them a year. It seems the way to go. Greg even lined up the surgery before he had all the testing done by the endocrinologist here.

If he can make that surgery on Tuesday, the root cause of all of this might be cleared up.

Wednesday, March 12, 2008


Greg has had chronic eczema on his hands and feet for going on two years now. The Chinese Medicine person he has been seeing has given him an herbal soak and home-made salve. While it seems to work, it works VERY, VERY SLOWLY. He soaks about 2 hours a day and, over the past six months or so, it has gotten slowly better, IF he keeps up the soaking regimen. Off and on, when there are open wounds, it seems to get slightly infected and then he soaks it in warm, salty water for a few days and that tends to take care of it. Swollen lymph nodes come, swollen lymph nodes go. It has become a familiar pattern.

Last week a patch on his right foot was starting to get infected again, and in his zeal to nick it in the bud, he soaked his feet in hot water that was a little hotter than usual. The next day he noticed he feet were red from the water line down.

Had he scalded himself without knowing it? Two days later, the red marks turned into huge, painful burn blisters. He hobbled to his last week of teaching classes (actually I drove him and picked him up for most of the week) and made a big impression on the dermatologist he had previously decided to see when progress on the eczema was slow. Can’t hurt to get the dermatologist’s opinion, I thought.

The Chinese Medicine doctor also recommended a full blood work-up, which he did last fall. That turned up an irregularity with one of his parathyroid glands (parathyroids are four little glands that regulate blood chemistry and are found on your thyroid.) If he can just hang on another two weeks until he is scheduled to have the offending parathyroid removed, maybe his body will get all back to normal. Burns are shallow, they will, with time, heal…


Thursday morning, after a nice hike in the foothills, I come home and get the call: the nurse at school saying Rees is not feeling well and has a slight fever: 100.5. I always suspect that those school thermometers are set a little too high.

I bring him home and set him up on the couch. Is it stress, exhaustion, is he really sick? He is lucid, but uncomfortable with a very sore throat. He hasn’t eaten. He is really sick, I conclude, and he checks out and takes a nap. The problem is that tonight and tomorrow is the 5th grade’s big musical production of The Jungle Book. He has been working towards this for months, with early morning rehearsals. I have been helping with the sets, props, and costumes. Tonight he is scheduled to be in the chorus, tomorrow is the big night where he plays an elephant and a snake. He has to be better by tomorrow night.

I finish sewing snaps on the orangutan belly, mend some torn monkey pants, then, when it is time to pick up Kadin, I tell him I am leaving, ask if he wants to come with me, and when he says he doesn’t, I tell him I’ll be back in 15 minutes. When I return I can hear him from a block away screaming in the house at the top of his lungs, “Mom! Where are you? Mom! Mom! Mooooooooooom!.” Just the thing to heal a sore throat.

Guess he is not lucid. The last time he was this unreasonable, the day before Halloween, I took him to the clinic and he had strep throat. I am taking him in again. I know if it is strep, he will likely be feeling much better in about 24 hours, just in time to do the musical. It is worth a try.

We head off to the SmartCare clinic, a walk-in clinic at a Walmart where you don’t have to make an appointment and they charge about a third less than our regular doctor (who couldn’t see him until the next day anyway.) Sure enough, Rees tests positive for strep throat, again.

Does he have it all the time and do I just take him in when there is a big event like Halloween or a performance in a musical? Why is he so vulnerable? I ask around at school and some moms tell me they have heard similar tales where there are a-symptomatic people in the family who keep re-infecting each other. Maybe we should all get tested.


Greg goes to the dermatologist and gets a burn ointment and yet another, more powerful steroid cream. It’s the new plan.

We all try to go to the clinic on the weekend to get our strep tests, but it doesn’t work out. On Monday, Greg is not feeling so well and now the lymph nodes in his left leg start flaring up. Monday night he can’t sleep because of the pain. He calls his new dermatologist (he has already gone to his regular doctor a few times with complications from eczema, with ho-hum results). The dermatologists’ message says he’ll get back to him in 24–48 hours. So we decide today is the day to traipse over to the drop-in clinic and get tested for strep and maybe see about the leg as well.

It’s the Tuesday after daylight savings. Official “grump week.” Rees is home again, not well. After dropping Kadin at school, I drive Greg in to teach his class with plans to go to the walk-in clinic at 11 when he’s done. I have a conference call scheduled for work at 1pm, plenty of time. At the clinic, we ask for strep tests and Greg says he’d also like the nurse to take a look at his leg. We get swabbed, I pass, Greg doesn’t, he’s positive for strep. Then the nurse has a look at his leg. She tells us to go directly to the Emergency Room. Oh boy…from strep test to Emergency Room.

I didn’t think seeing the dermatologist would hurt, but it looks like it might well have landed Greg in the hospital. IV antibiotics for him. And one strong guy too. Eczema, burns, positive for strep, a raging leg infection worthy of emergency intervention, and not even a fever. Go Greg!

So we start the IV antibiotics and it’s a wait-and-see game. In 24 hours there should be good improvement, depending if they got the right drug for the right bug. He doesn’t have to stay overnight, but does have to return every 8 hours until he shows improvement and can graduate to oral antibiotics.

We finish at the hospital just in time to drop Greg and Rees at home so I can pick Kadin up from school and take him directly to the clinic for his turn. “I don’t have strep! I’m not having a throat culture! I can’t do it! I can’t swallow that big stick!” and so on. Kadin is thrilled about the plan. But it turns out our fears are not unfounded. He too tests positive. The nurse writes a prescription for me as well, as it is likely that I had a false negative and we should all be treated simultaneously just to be on the safe side. She doesn’t understand the lengths I go to to avoid antibiotics, but I figure for the good of my family, it’s the least I can do.

We now have the following schedule: Rees swallows one pill twice a day. Kadin chews one pill three times a day. I swallow one pill four times a day, and Greg goes back to the ER every eight hours for another IV drip.