Our initial foray into the land of MDS and Vidaza has been so far, dull, boring, tiring etc. I had somehow thought that being back in the land of chemo was going to be fraught with terror, unexpected complications and dealing with a sicker child. The over active imagination has been exactly that. What I am finding is that each little incidents are taken with an additional degree of gravitas. When Maya spiked a fever last week, we were admitted. The sudden activity surrounding Maya had woken us up from a certain slumber that we’ve been enjoying. That was to be no more.
Since we’ve been admitted, it’s been rather quiet. Maya was her usual self doing what she does best; being her awesome self, enjoying her environment and passing time the best possible way she can. There are the late mornings as the result of late nights, late breakfasts, late lunches and late dinners. There are play time with Ooch folks and other volunteers. And there are T.V shows that can never be missed along with reading books and forever yakking away at both mom and dad. Daddy… do this, no do that… “Oh for love the of god!!!”
As Maya has been doing so well, we event got to go home on a day pass this past Friday. There was a birthday party that must be attended, and she did. Maya has fabulous nails from the spa party, which she absolutely loves; Indeed, Maya is her mothers daughter. She had a great time at the birthday party and we casually strolled back to Sick kids around 10 PM.
Again today we took a day pass to go home. Maya played with her most excellent next door neighbor friends. Around 4:30 PM, Maya looked tired and asked for a warm blanket. By 6 PM, she was spiking a fever and we decided to bring her back to sick kids. Given the blood issues, fever is no small matter. At sick kids, her fever was running at 39.6 degrees. Her vitals were quickly taken, blood tests off to the lab. Heart rate, 136, BP 88 over 56. Not great, but not too bad either. I guess we have also become more sensitive to Maya’s condition as well. Before MDS, we would wait and watch Maya. No more.
The natural tendency is to play things safe. The resident wanted to do a peripheral blood test (a poke), which is a standard procedure. We always try to fight this, as if we don’t hurt Maya enough. But, we also understand the rationale for it. Namely they don’t want to mistaken the line infection (a small possibility) for the cause of her fever and not treat the (potential other) cause of the fever. Hence the peripheral blood test.
After the initial observation, it was decided that Maya should get the antibiotics to run. The blood tests were starting to come back. White cell count is really elevated, at 16. But with MDS, this means little. But yes, let’s get the antibiotics going, and no, not Vancomycin. Sepsis is no small matter.
We are worried. The physician on duty along with the on call resident is worried. And then, suddenly Maya’s fever dropped and she became wide awake, fully responsive and back to her normal self around 9:30 – 10 PM.
Now, at 11 PM, she’s eating a pizza and her and I had a little conversation about… evolution. She is watching Max and Ruby. It almost, almost feels like all the anxiety never happened. Things are back to the old boring, dull normal. Our normal. In another hour or two, I will put on my stern father voice and tell her to go to bed. She will then feign great disappointment, but will lie down and within minutes, she’ll be off to sleep.
I, on the other hand will continue to think about what this all means. Most likely a reaction to Vidaza which is known to cause fever. Who can say? For now, I am being summond to watch Max and Ruby. She is, as I type this, telling me that “You always want to sleep with me, now you have a chance and you’re on the computer.”… The dude abides. But we tread ever so lightly on the edge that could take us sliding down the knife’s edge called MDS.
[Update Oct 15, 2012]
Since last night, all things have been back to our norm. She has not been febrile and she’s been pretty darn good. This afternoon, few things transpired that needed additional note.
Firstly, Maya’s culture came back and she grew a bug. It’s gram positive bacteria. The type of the bug is not yet know. However, the nurse practitioner specified that gram positive bacteria is very common on skin, so it’s likely that Maya’s line was infected when her CVL broke. OK. The antibiotic of choice is …. wait for it…. Vancomycin! NP felt strongly that we should start on Vanco right away. We do not want to take any chances! OK… we get it. However, Maya does not react very well to Vancomycin.
- Maya get’s red man syndrome.
- Maya gets neuropathic pain.
- Vancomycin (may) cause additional hearing loss
The nurse practitioner felt that we should include the fellow in this discussion so we don’t have to have two separate discussions. OK. Some two hours later, Sick kids Social worker came by and I vented on her. My arguments were:
- If the NP felt that the situation was severe enough to warrent Vanco, where was the Fellow? Is it serious or not?
- If serious, the fellow should have come by rather quickly. Since the fellow did not come by urgently, clearly it’s not so urgent.
- If not so dire, why would you recommend Vancomycin, when you know the side effects are all significant for Maya? What’s more important? The procedure or some small degree of sensitivity towards Maya’s needs? We will always choose Maya’s life over her hearing. However, you need to do a bit better than tell us that it’s the standard of care.
- What gram positive bacteria?
- Is there an alternative?
- Maya has not spiked a fever since… Is the use of Vancomycin the most optimal option available?
Just as I was having this discussion with the social worker, the nurse came by and told me that Maya will be getting tazocin and “pip taz”. Huh? Sorry, I didn’t agree to that? I thought the fellow is going to come by to discuss the next course of action WRT to Vancomycin? I was very glad to have the social worker there to witness why we seemed so onerous and cantakerous. If we are in the wrong, or if we do not have a clear picture, please explain to us where our mis-step is!
Well, the fellow came by and explained what was going on:
- Firstly, the infection is likely due to the break in the central line. Because the culprit is likely to be her CVL, the fellow suggested that we take the line out.
- Since we can’t use the CVL, Maya needs a peripheral line put in.
- Vancomycin covers the most amount of bacterial infections and she would recommend vancomycin. However, given that Maya has not spiked a fever, she did not feel so strongly in using Vancomycin. Tazocin and Pip-taz “should” be OK. If Maya spikes another fever, we should switch to Vanco.
- At this point for Maya, given that the amount of hearing loss is significant, loss through Vanco should be very minimal.
OK. That makes sense. Yes, let’s take the CVL out. I do not feel comfortable with Vancomycin, since Maya has not spiked another fever. I would rather use tazocin and pip-taz. If Maya spikes another fever, yes I agree that we should use Vancomycin.
I’ve found dealing with the ward 8-A rather frustrating. What would it have taken to present this reasoned approach? Dealing with Fellows and Sr. Fellows have always been very pleasant and reasonable. Non fellows, not so much.
We are told again and again that the parents should be, must be the greatest advocate for the child. Never has this been more heart felt than in the last two weeks. However, it has not crossed my mind that we would be actively pushing back as much as we have this week The frustration has been (and will likely be in the future) that we do not necessarily feel that best interest of Maya is congruent in what has been delivered.
Parents, advocate for your child!
[Update Oct 16, 2012]
OK. Now that I’ve had a day to calm down, I think it’s only fair that I also put down the clinician’s perspective. I am noting this from the previous conversations that I’ve had with a few nurse practitioners as well as physicians. Therefore, I may not be getting the story completely accurate. Having said that, I do think that the spirit of the procedure is captured. If anyone wishes to correct me, please feel free to do so. Privately, publically, does not matter.
The problem with bacterial infection is that unless you can culture them, you really do not know what the problem is. Growing the bug takes time. Even so, you can’t really know whether the primary source of the infection is the one that’s been grown in the lab. Some bacteria have long incubation cycles. For example, TB can take weeks to culture. And sometimes, you may not be able to grow them at all. And then, there is also the possibility of false positive, IE, contamination of some sort.
Therefore, in order to ensure that there is a good coverage, antibiotic such as Vancomycin, Pip-taz and Tazocin are used to ensure wide coverage. It is also the case that the patient may look well, but in fact sepsis may be developing undetected. Once the infection takes over, it may be too late to try to recover from it by administering the antibiotic and result is death through sepsis.
So, this is our dilema. On one hand, we don’t want to take unnecessary chances, in this case with sepsis. On the other hand, we do not want our daughter harmed through therapy either. We’ve already incurred so much damage in Maya in the name of care. Both side of the knife’s edge are slippery slopes. The previous two weeks have high lighted this slope rather dramatically. In these two weeks, I don’t believe using Vanco was necessary. Next time, it could very well be the thing to use. The truth is, neither the doctors here nor can we tell what the optimal solution is WRT to fever. Certainly not when the fever is initially presented. For doctors, the safest approach is the best approach. We want that as well. But with less potential for discomfort and damage.
Possible analogy could be using the vietnam style carpet bombing as opposed to a precision rocket to target the enemy. “Terminate, with extreme prejudice”. We would rather the latter, targetted aproach. But we also understand that not knowing what the target is, carpet bombing may be the acceptable course of action. It’s a slippery slope and the edge narrow.