Update from Keith: June 15th, 2008

Well, today wasn't quite the Father's Day that I had imagined. T had a difficult time last night; she threw up every three hours or so. When this repeated at 6:30 AM, I could feel she was quite warm. Uh oh.

We took her temperature and she was 38.4 (about 101). Any fever over 38 and we have to call the hospital. Kris did and, of course, they asked us to come in right away. My Dad came over to watch Charlie (Charles was still sleeping) and we left for the hospital around 7.

The first stop on these visits is always the Emergency Department. They are mostly clueless about what to do with T, but they do know how to access her port, who they should call, etc. Of course, they also insist on doing their own exam each time and coming up with their own pet diagnosis for what ails her. As if Rhabdomyosarcoma is insufficient to explain her condition.

When we got to the ED, her temperature was 38.9 and she was having chills. They fairly quickly got us into our own room (which is good because it allows Taylor to take of the surgical mask that she otherwise wears when anywhere in the hospital outside 4 West). Taylor threw up not long after we got there; she was nervous about having to have her port accessed (and thus stuck with a needle) and that sometimes leads to vomiting. It's frustrating for Kris and I because we really want T to be used to this by now (after all this happens a couple of times each week and she always reports that the pain is not much) but we forget she's only 6. Six year olds (and especially 6 year olds named Taylor Thorell) get nervous over things like this).

After that, the ED resident came in to assess her. The nurse quickly asked him if she should re-administer the dose of Tylenol that T had just thrown up. The doc told her to give T Motrin instead. Big mistake. Motrin is a no-no for cancer kids because it can interfere with platelet growth or something like that. Kris pointed it out and he decided to stick with Tylenol. Good idea, Doc. Did that take 4 years of med school to figure out?

That was just a warm-up for this guy. He had lots of questions about her medical history (was she full term? why did you have a c-section?, etc.) One of these days, in my best Carville voice, I just want to say, "It's the rhabdomyosarcoma, stupid!" After the endless annoying questions, he looked at her mouth (briefly; I think he could tell it was over his level of competence), listened to her chest intently, and then turned to check her abdomen. So, he starts pressing on her stomach hard and asking if it hurts (of course it hurts, moron, you're pressing hard on it). Taylor, being 6, answered truthfully and told him yeah, it hurts (it would hurt me, too). So, Dr Genius decides that T needs a stomach X-ray because she has stomach pain. Leave aside that the only reason we are here is not because she has pain anywhere or even because of her chronic emesis, but is solely because she needs antibiotics since she is neutropenic and has a 38.4 degree fever. This guy apparently thinks that a stomach X-ray is going to solve all Taylor's problems. Do you think maybe it's the rhabdomyosarcoma IN HER HEAD that is causing her the problems, Doc? But seriously, thanks for exposing her to more radiation. God knows she needs more of that.

I'm not even sure how the stomach X-ray turned out. In fact, I'm not sure anyone ever viewed it. No wonder the cost of emergency room visits is bankrupting our health care system. The only good thing was that the radiology waiting room (where Taylor had to again don her mask and risk exposing herself to more germs) had the show "Full House" on, which Taylor likes (the ED rooms have TV's but no reception, they only play DVD's). This particular episode was set in Tahoe, so Taylor liked it even better. I hope we can take a long weekend there sometime this summer. I think it would be good for T.

Not long after the X-ray, a bed was ready on 4 West. So we went up there around 11 and T remains there getting antibiotics. Episodes like this usually result in a 72 hour stay unless a blood culture shows something to worry about in which case they can be longer.

I spent Father's Day morning with Taylor and the afternoon with Charlie. We went back down at night and Kris, Charlie and I went to dinner while my parents spent time with T. She was mostly in good spirits today which is a definite improvement from the last few days.

My Mom will spend tomorrow night with T and I'll probably spend Tuesday night if my work schedule permits. I can always take a rain check on Father's Day. Heck, the only thing I want anyway is for T to get better and maybe this stay will move that closer. Here's hoping.


Anonymous said...

Hi, I'm a friend of Bill and Peggy's and I've worked in hospitals in NYC.

I believe you can ask your physician to bring Taylor directly to the Pediatric Oncology ward when she is ill and needs an evaluation. Taylor is an outpatient receiving specialized treatment, and they should agree that she should receive concise and controlled care from their department.

As you have experienced the ER is a waist of your time and an added burden on little Taylor. You don't need to subject your child to this, and it is not your responsibility to give the residents new training. As you experienced it can even be dangerous (wrong drugs, X-rays!!!etc.).

If you continue to have difficulty you can contact a hospital patient advocate or speak with the manager or director of the pediatric department.

Regarding the vomiting. Some parents find improvement by adding oatmeal, organic brown rice (wash and soak before cooking)and fennel tea to the the childs diet. They seem to calm the digestive track. My daughter loves Fennel tea for tummy aches. We add a bit of raw honey that is also very healing.

My prayer are with you, Felicia