Making plans

I am procrastinating. What I should be doing now is planning for R’s Christmas. By this, I do not mean buying Christmas presents. No, the planning is the more mundane task of ensuring that we have medicines, documents and protocols in place in the event that R becomes ill again when we are away from home over Christmas.

I am not by nature an organized person. The cliché is that mothers make ideal employees because motherhood teaches organizational skills. I’m not convinced. I do think that to survive as a carer, however, developing some skill in this area is essential.

Take medicines. Several of R’s medicines are unavailable from the pharmacy at short notice. Moreover, R’s GP requires not less than 48 hours to issue a prescription. Together this means that it can take up to 5 days to obtain the medicine. The medicines that R takes on a daily basis could, in theory, be ordered automatically by the pharmacy on our behalf. This doesn’t work in practice because R’s medicines are continually changing (dosages and drugs) and because R gets some of her medicines at school and needs to have duplicate prescriptions for school. Some of the medicines are prescribed on an as required basis and therefore need replaced on an unpredictable schedule. R has paracetamol suppositories (a wonderful innovation because when R gets sick she refuses to take any medicines by mouth and consequently gets sicker). These come in boxes of 10, which if she is poorly, don’t last long. I am constantly requesting prescriptions.

R is struggling with seizures. Her most recent emergency hospital admission was less than a week ago. Her seizures are coming in clusters. The rescue (emergency) medicine that she has been prescribed is giving her only brief respite (a matter of hours) before the seizures resume. The concern, expressed by the doctors, is that these clusters could become continuous seizures – status epilepticus – which can lead to brain damage or worse. We live only 20 minutes (less by ambulance) from a specialist center for paediatric neurology. My parents live almost four hours away from one.

So for this reason, I need to make plans. I spoke yesterday with the hospital. R’s seizure management plan has been amended and extended. She has been prescribed a second emergency medicine, which we will take with us and which is to be administered in the event that the first is ineffective. We are to phone the on-call neurologist directly. I am gathering hospital letters, drawing up a list of current medications dosages and diagnoses and general information on R and Rett syndrome for the paediatricians up north, should R take ill. I have ordered repeat prescriptions of everything.

None of this is making me feel very festive. Until yesterday, I had barely started Christmas shopping and I am still behind. This is not how I want to be counting down to Christmas with R.