Keeping it Together

Well, I have to say, this has been a really rough winter. Ezzy has been sick, in chronological order, with:
A UTI and kidney stones in November
A reaction to Lacosamide in December
A severe double ear infection and strep throat (WBC 32,500) followed by a weird vomiting spell in January
A GI virus (caught while inpatient for a procedure) followed by a hospitalization for a high WBC (35,000) of unknown origin in February

Now, I am fairly certain, she is brewing a respiratory thing and her WBC count is still not all the way down. While all of these things have resolved–or are in the process of resolving, it has made for a rough run.

What is weird about it is that we have totally been through worse, but I guess I feel like I am struggling with the barrage of more “typical” issues, with less “typical” reactions. At the same time, she seems to be having some very mild seizure activity, but she has not had a real clear seizure in four weeks. And developmentally she is making strides…at times at alarming rates, and she just seems so much more grownup.

I guess I feel like I am constantly bracing for something, despite the positive changes. Every time she gets sick it comes with the question of whether the little cold will lead to aspiration or the fever to a major seizure or the vomiting to a worsening nissen. It makes me jumpy…I feel as though we are constantly on the edge of something frightening with Ez. One little mistake, one lapse in judgement and she is in danger. And I find it hard, perhaps because I know her so well now, to deal with the possibility of handing over her care to the hospital…so we avoid the hospital as much as is reasonable (I hope at this point it is clear why…if not this will clear it up).

For instance, she was inpatient at our Children’s Hospital (not our local hospital) two weeks ago. And somehow was put in a room with an infant on contact precautions. I am still not certain how this happened, but my suspicion is that it was because she was just in for a scheduled procedure (impedance probe) and she looks pretty healthy (despite being on a pretty precarious balance). Well, long story short, she was kept up ALL night by the ins and outs of nurses and doctors and our roommate’s mom on her cell phone at all hours. And she contracted a GI virus (what her little roommate was in for). So, yeah, brilliant: take her to the hospital for something safe and non-emergent, get treated like I am crazy because I am worried about her being able to sleep and exposure, and THEN, of course, contract something that leads to 1/2 pound of weight loss and puts her at risk of aspiration.

And I’m the crazy one.

Then last week she frightened us enough to bring her to the ER because the PCP saw her white blood cell count was so elevated, but could find no reason for the elevation. While we try to avoid hospital stays, I am clear about where our boundaries are. This second elevation in WBC without a clear cause was troubling and while she seemed sick, she didn’t seem very sick…so I was worried that we wouldn’t be able to judge if she had improved without blood work: Boundary. We took her in and spent about 6 hours in the ER. Since this is our local hospital, not our Children’s Hospital, the waiting room is shared with adults–but there is a separate children’s area once you get to a room. We spend a good deal of time  in the waiting room and then again near X-ray next to a man who was some combination of mentally ill, drunk, and/or high. He was threatening to harm himself, yelling at people, smoking in the bathroom, and then accusing a poor woman from housekeeping of smoking crack because she was black (she handled it very well, I must say). Fantastic location to hang with your sick kiddo, right? Then, due to an oversight by the ER and a slow pharmacy, Esmé’s anti-convulsant was delayed for 4 hours. I should say, it wasn’t due soon after we arrived at the hospital. We got there around 1pm, I had just given her the midday dose. It was due at 8pm. She got it at midnight…It took them 12 hours to get it together…

Again, I find myself losing it at the realization that the most basic things my child needs, meds in this case, sleep and reasonable safety from exposure in the other, cannot be met in the hospital. Now, if we weren’t regulars at the hospital I think I would swallow the sets of excuses: “the pharmacy was late,” “the transfer upstairs held up the pharmacy,” “the hospital is not a restful place,” “let’s give her tylenol to help her sleep,” etc. But I just don’t buy it anymore. Really I don’t. Where else should a person be able to trust they’ll get their medications? The hospital. What is the most basic way to heal a sick body? Sleep. How do you avoid disease? Avoid diseases.

It is so simple that I find it infuriating. And it is even more infuriating to be handed these excuses as though there is no alternative.

But meanwhile the progress Ezzy makes in the face of my just “keeping it together” is humbling. She is so patient. So good. So loving. So strong.

I have to remember to take on her model: The joyful warrior. I need to fight for her, and I need to do better than just “keeping it together.”