Hospital visits are stressful. Today we had an appointment with our epilepsy paediatrician that ended up being a two and a half hour visit. Not with the paediatrician (in fact, our appointment had been rescheduled without us knowing, so we were squeezed in between patients. We carved out half an hour of someone else’s appointment. We should have hand an hour with her – I’m frustrated!).
Needless to say, I went in armed with a list. I had the cheat sheet ready (mainly with a printed a4 sheet with a list of medications and dosages so we don’t need to waste time writing them out) and a list of things I wanted to cover. We talked fast. About Mikaere’s seizures and med changes and vomits and dropping a weight percentile, about referrals to respiratory, Gastro and a developmental dentist. He had a rash on his face, and needs bloods for his metabolic consultant and a hip X-ray for his physio and a strength/needs assessment for his educational psychologist. She measured his head and listened to his chest and felt his liver.
We got a lot done, and as I wheeled Mikaere out (with the rain cover on to keep him from coughs and colds and germs of everyone else in the hospital) I had a new list of things to chase and follow up.
First a nappy change and a flush, and then to the paediatric bloods room. I liked this hematologist, his name was Rafal. He was experienced and didn’t have to prick Mikaere several times. He used a butterfly needle to collect blood in an adult tube (the red one; with no added mixes) and decanted into the smaller bottles. I like that, it meant it was quick, and less damage was done to my boys arm. Mikaere was a trooper, no tears, no drama. He even had a smile for Rafal. I appreciate that there was no screaming, and Rafal did everything he could to reduce the pain and reduce risk.
We paused in a side corridor so I could give meds and put then feed on, then to visit the CCN (community care nurse) to pick up some giving sets (that’s another fight we’re fighting, as nutricia have changed their giving sets again and the new alternative doesn’t work for us) and some catheters and to get a form signed.
And then onwards to X-ray, to look at Mikaere’s hips for hip subluxation. Mikaere was well behaved, and tolerated it like a pro. I laughed when he peed all over the table (I’d warned the radiologist he would). And then another flush, and home again to meet our hospice nurses.
But this is what it is for us now, I work hard to ensure our visits are super super efficient. That bloods and xrays work alongside other appointments (ideally on an off day so we’re not waiting alongside other clinics). It also means we’re not there all the time, keeping our hospital visits to a minimum is always a priority for us. Reducing risk of catching something from someone else.
It’s hard, and I power through the day. But this is what our day to day looks like. This is our ordinary at the minute. I hate it, hate it hate it hate it. But it’s what we do to keep our boy safe. So hey ho. Onwards we go .