There is so very much to write about lately. Ideas whizz through my mind constantly, but I haven’t written any of them down. I think that our experiences over the past few weeks are acting as a block to everything else in my mind. So, if you’ll excuse a boring old medical update, I think I need to bring you up to speed on what has happened with Lil Z before I go on about everything else.
Not that long ago, everything was looking rosy. Our long-awaited and much-anticipated puppy, Ben, was finally old enough to bring home. And despite being overwhelmed by his new surroundings, he still showed an interest in (and a willingness to snuggle with) Lil Z. And Ben slept through the night without crying (or weeing on his bed). I woke up that Friday feeling optimistic.
When I stepped out of the shower, I heard Lil Z screaming. It wasn’t her usual ‘I’m sick of being in bed’ grumble, but an awful, pain-filled shriek. Wrapped in a towel, I ran into her room and found her screaming while having a seizure. I called QB and we tried to calm her, but with no success. She was totally non-responsive, her body was stiff and she was shrieking in pain. We tried giving her Midazolam – her ‘rescue med’ for seizures. She was still not responding to us and screaming. So, I called an ambulance. And fortunately before they arrived I also pulled on some clothes.
The paramedics took her out to the ambulance and gave her another dose of Midaz. The ICU paramedics arrived as well. After about 5 minutes the Midaz calmed her a bit, so they took us to the hospital.
Its been awhile since we were taken into ‘resus’ instead of just the standard emergency room cubicle, but that’s where we went. She was on oxygen (Midaz can affect breathing) and they put a cannula in her arm (always a terrible process because she has bad veins). By this point Lil Z was pretty much out of it. They eventually decided she was breathing fine on her own and moved us from resus to a cubicle until they could find us a place on the ward.
When Lil Z woke up, she was miserable. She was fussy and kept crying like she was uncomfortable. She was also holding her legs in a strange way and very stiff. I pointed it out to one of the doctors and they had a look at her, but attributed it to the seizure.
Up on the ward, we saw the Neurologist and I mentioned Lil Z’s legs again. She examined her closely and couldn’t find any localised pain. But she was concerned about the fact Lil Z was still so out of it – and very rigid – 12 hours after the seizure. She was concerned that Lil Z might have suffered a brain hemorrhage or stroke. She didn’t think it was likely, but just the mention of it scared me…
So, that night Lil Z had a head CT, which allowed them (thankfully) to rule out a brain bleed or major stroke. On Saturday morning, Lil Z seemed a bit better. The doctors had discovered that she had a urinary tract infection (UTI) which was likely the cause of the Friday morning seizure. She was started on IV antibiotics and I was told that we were likely to be able to go home on Sunday.
QB and Vegemite came to visit on Saturday evening. When they left, QB noticed that Lil Z’s breathing was a bit shallow. I kept an eye on her and it didn’t seem to improve. Also, her legs – which had been relaxed during the day – were suddenly rigid and “postured” again. I called a nurse and she put the pulse oximeter on Lil Z. She was in the low 80s (normal range is 95-100). The nurse put an oxygen mask on Lil Z to boost her sats, but it didn’t work. Her sats kept dropping, falling from the 80s to the low 70s. She was still conscious and fighting me to get the oxygen mask off. I was getting worried. I remembered that Vegemite had given me a kiss to give to Lil Z and I had forgotten, so I quickly gave her a kiss from her sister. It suddenly felt important.
When her sats didn’t improve with oxygen, the nurse called the on-call doctor. He didn’t seem terribly concerned. Then another doctor appeared. And then the tension started rising in the room. They decided to call a ‘code blue’ on her (a hospital emergency code meaning a patient requires immediate resuscitation), and within a minute there were 15 doctors and nurses in the room. I was in the corner of the room, terrified.
The doctor in charge was actually the same doctor who had looked after Lil Z in ‘resus’ in the emergency room. We’ve met him before – he even remembered Lil Z – and I like and trust him, so it was a bit of a relief to see him come in and take over.
She had just been put on CPAP when she had a big seizure. It took two doses of Midaz and Phenytoin to stop the seizure. She was very, very close to being intubated – the equipment was out, the sedatives drawn up, and the doctors had assigned the roles for doing it. Fortunately, her sats responded to the CPAP and they held off.
QB arrived shortly before they took her to PICU. Gradually overnight she was weaned off CPAP and then oxygen and by morning she was breathing on her own again. She suffered several minor seizures, but she was doing well enough to be moved back to the ward.
I was still worried about her legs – which weren’t right – and the Neuro team said they suspected that it might be dystonia. This upset me since dystonia is painful and difficult to treat, and would be yet another obstacle to her development – and enjoyment of life.
The Neuro team also decided that it would be best to give her another medication to prevent any further breakthrough seizures while she was still vulnerable from the UTI. She was put on Clonazepam, which made her extremely sleepy. As a result, she spent most of Sunday and Monday asleep.
On Monday, our au pair came to visit and to give me a little break. During her visit, she massaged and stretched Lil Z’s legs – and noticed that one knee was swollen. We raised it with the doctor and she had an X-ray the next day. It showed she had a fractured femur.
I was stunned. When did it happen? On Friday with the very first seizure? But how did so many doctors miss it so many times? And if it happened on Friday, why did it not swell until Monday? But how could it have happened on Sunday or Monday when Lil Z spent most of her time sleeping? It just didn’t make any sense.
The next day they did more X-rays and concluded that Lil Z has fragile bones. This may be caused by the fact that she has been on anti-epileptic drugs since she was 7 months old. Or it could be a symptom of her genetic syndrome. Or both. But the conclusion was that it wouldn’t have taken much to cause a fracture in her femur.
By this point Lil Z had finished her course of IV antibiotics and was starting to be a bit more like herself (although still very sleepy). Her leg was put in a cast and at last – at long, long last – we were given the green light to go home. Just in time, too, since we’d acquired some very noisy and annoying roommates.
And so, we are home at last, and trying to settle into life that includes Lil Z in a cast from her hip to her toes (at least it isn’t a hip spica this time). But I think we are all a little bit shaken by the experience. Lil Z has been doing so well lately, that I think we forgot how quickly things can go wrong. Or how serious it can get.