30 November – seizure
It wasn’t a good week and all I was looking forward to was my personal training session on Friday. I’d missed my regular session on Wednesday because Lil Z had a neurology appointment at the RCH, so had rescheduled for the Friday and took the girls. I was actually feeling pretty empowered as I had the feeding pump attached to the pram and was managing Lil Z’s feeds pretty well on the go. We walked to the park to do our workout and when we arrived, Lil Z had a seizure. It wasn’t a severe one. She was having the usual flexor spasms but was still conscious – blinking and moving between spasms. It stopped in less than 5 minutes, so no rescue meds or ambulance was necessary. However, often she will have a second, more serious seizure after a mild one, so instead of working out, we went home instead.
It was a very hot day and I wonder if the heat may have been a trigger?
29 November – reinsertion of NG tube
Pretty much as it says on the tin. Lil Z managed to pull the whole tube out by herself by hooking the nozzle end in the bars of the cot and then rolling over. I suspect that yes, it did hurt, since it took a long time to get her calmed down. We went into the ED and they stuffed it back in again, and after a bit of faffing and fussing about tube placement, we went home.
26 November – seizure
Just as I thought we’d sorted everything out and I was feeling proud that I’d managed to set up and run two NG tube feeds at home by myself, Lil Z had a seizure. I’ve since spoken with her neuro about how to describe her seizures and learned that they’re not actually tonic seizures but instead generalised flexor spasms.
QB and I were both at home when the seizure happened and although we called the ambulance (the seizure lasted over 10 minutes) we told the paramedics that we felt we could cope after the seizure ended. Then her sats dropped and she turned blue around the mouth and we conceeded she needed to go back to the Royal Children’s. So, back we went. After an hour on oxygen and an hour off oxygen but maintaining her sats, the wonderful ED doctor on call declared that I knew what I was doing and was perfectly competent to care for Lil Z at home and sent us home.
Return to hospital – 22-26 November
Lil Z never really resumed taking a bottle after her trip to the hospital the week before. We struggled and tempted but without results. I was setting an alarm to wake up every 2 hours during the night because the only chance to get her to feed was when she was asleep. It was exhausting, demoralising and obviously not sustainable. On Thursday, 22 November, we had an appointment with The Prof (her paediatrician). The appointment was my goal: to just keep Lil Z going until then. We managed that – just.
Predictably, we were admitted and another NG tube was put in. After a continuous overnight feed, Lil Z was a new person – awake, aware and happy. We spent the weekend in hospital, feeding up Lil Z and learning to deal with the NG tube and pump.
The plan is now to keep the tube in for the next month at least. After a few weeks off, we’re going to begin offering bottles before tube feeds. If that fails, we’ll then begin skipping tube feeds and offering a bottle instead. And if that fails, then we are going to have a serious discussion with The Prof about PEG feeding.
Return to the hospital – 16-18 November
Lil Z had been doing well following her seizure. I was managing to get nearly enough PediaSure into her to keep even the nutritionist happy. And then, unexpectedly, she stopped. She refused to take a bottle – with PediaSure or anything else in it. She was an excellent example of the old addage “you can lead a horse to water but you can’t make it drink”. We tried everything: constantly offering her a bottle, forcing the bottle into her mouth, waking her from a deep sleep and slipping the bottle into her mouth before she was awake enough to realise what was happening, dribbling a bit of milk in her mouth, flavouring the milk with strawberry or chocolate powder… Nothing worked.
After a day of very little intake and a night of outright refusal, Lil Z vomited her meds on Friday morning and I decided it was time to go to the hospital. Knowing it wasn’t going to be a brief visit, I packed our bags, made arrangements for Vegemite to be looked after until QB got home from work, bought a bottle of water and a sandwich and headed for the hospital. I was right. We sat in the Emergency Department all day before a bed became available and we were moved back to Paterson Ward.
The latest thinking on the cause behind the stop in feeding is that she has a mild cold, which has caused secretions to pool in her throat. Most people would just swallow these, but as Lil Z has swallowing issues, the secretions just sit in her throat. So, when she goes to suck on a bottle, she chokes, coughs, gags and vomits. In a sort of misguided attempt to protect herself, she is therefore refusing to take a bottle.
They put a nasal gastric tube in her in the Emergency Department and started her on PediaSure. After a massive vomit, they switched to rehydration fluids instead, but resumed PediaSure the following day. Despite a vomit in the middle of the night, by Sunday The Prof (Lil Z’s paediatrician) decided to take the tube out – with the logic that she wouldn’t take a bottle so long as the tube was in. We then agreed that I would take Lil Z home. We were staying in a room with 3 other patients – two teenagers and a baby. It was crowded, noisy and the lights were always on until late – the worst possible environment for a child with sensory issues. So, we headed home, desperately hoping that she would agree to start taking bottles again.
Starting Keppra – 3 November
After the seizure the previous day, the Neurologist added Keppra to Lil Z’s growing list of medications. I think they feel a bit stuck since they’re no longer able to raise the Trileptal for fear of making her extremely drowsy again, so now want to transition her off the Trileptal and on to something else.
I fear Keppra. The Epilepsy Parents Australia group that I belong to on Facebook is full of terrible stories of happy children turned into disruptive, aggressive, unhappy children. I hope it does not have this side effect on Lil Z.
The more I learn about epilepsy the more I realise what a fine balance it is between controlling the seizures and living with the side effects of the medications.
Tonic Seizure – 2 November
In Coles (grocery store) after a slightly grumpy morning. The seizure lasted around 20 minutes and it took her around 10 minutes to come out of it after being given Midaz. We went to the hospital by ambulance, but were only in the Emergency Department for a matter of hours before I convinced them to send us home.