Wednesday, 6 April 2011

That was scary!! 999!!!

Hope was unusually sleepy on Monday; a sure sign she's about to come down with something. We went to bed about 11 (hope was in with us). She started fitting. Not an unusual occurrence for , but when i noticed it was getting stronger rather than coming to an end, I glanced at the clock. 11:33. This is something that's become fairly instinctive now, knowing that there's a limit to the time she should be left fitting. Approaching the ten minute mark, I told Chris I was thinking of calling for an ambulance. Hope was still on her back, and then started choking. I lifted her up and she was really sick. SHE HAS NEVER BEEN SICK BEFORE. Then she was choking again though the seizure seemed to be lessening. We called for an ambulance. Hope's seizure seemed to have ended, but she hadn't recovered to her normal self. She was quite unresponsive and trembling and was having some jerky movements in her legs and feet ( leftover seizure activity). The first ambulance crew to arrive was a fast response unit in a car, so they called for an actual ambulance to come and take her to hospital . She seemed to quite enjoy the ride. Though I hated leaving Jordan in Max in bed , I kissed them before I left, and felt to sad knowing they'd wake up worried :"(

Hope was seen by a nurse upon arrival at the hospital bay. She started fitting again, and they moved her to a resuscitation room! A bit extreme I thought! And scary! But they said that's they'd bleeped the paediatric doctors and that's where they'd would want to see her cause they'd have everything they needed to hand. Her fit had ended by the time they arrived, though her little toe and foot were twitching :0(

They took bloods and arranged for her to be taken up to the ward. Her lactate level was upto 4.8 which is so so high and made me very sad ( it should be under 1.6, but Hope's is always raised, though last time it was checked it was only 2.4). It's an indicator that something's definitely not right. Her temperature was 37.8 which is really high for her. Because of the mitochondrial disorder her normal body temp is only 35, and has never been above 36.

She had another nasty fit on the ward, and the doctor was just ready to give her the rectal diazepam to knock her out when the seizure lessened.

Still not knowing what's really wrong,they decided to treat her with intravenous antibiotics, and iv fluids to treat the acidosis in her blood.

By the time this was set up, it was 4am. The recliner chairs to sleep in are far from comfy, and before I knew it, it was morning.

She was on hourly obs, and continuing her iv fluids until the doctor came around 1. He didn't really know what's wrong either, but agreed that we could go home in the afternoon providing she kept her canula in, and her lactate had come down and her hydration was ok. So more bloods. The saying 'like trying to get blood from a stone ' springs to mind. Poor lil honkey is like a pin cushion. Later in the afternoon we were told that the blood gases machine wasn't working, so we could go home for the night and come back in first thing in the morning for more iv fluids, antibiotics and to repeat the blood tests.

Hope slept all evening, through the night, and was still sleeping when we went back in at 9. She had her iv's, then was seen by the junior doctor. She wasn't too happy with her or that her lactate was still 3.8, and I was concerned that she was so sleepy and still jerky, so we had to wait for the registrar to see her. The registrar felt that the lactate, sleepiness and jerkiness were all related to her having some kind of infection, and hopefully she'll improve soon. We were discharged, but have to go back on Friday , by which time , hopefully, she'll have improved, and hopefully her lactate will have come down. If not, then I think she'll be admitted again.

She's Still fast asleep (6pm). I miss seeing her smile. I've tried putting her in the swing, and rowing the boat, and blowing her with the hair dryer- all her favourite things, but no smiles. Though she did manage some ice-cream from the ice cream van after school.


  1. Oh Caroline, I can't imagine what a scary few days it's been for you all, Hope included. I really hope that whatever infection it is is short-lived and she's back to herself again very soon, giving you those beautiful smiles. Thinking of you and hoping that's it on the 'unwanted excitement' front. Love love love xxxx Get Well Soon Honk xxxx (Charlotte xxx)

  2. Poor Hope and poor you, kind of sounds really similar to the experience we had with Liam on Friday. I hope everything goes ok and I hope that Hope starts getting back to her usually self really quickly. If there is anything we can do please let us know x

  3. Plus I know exactly what you mean about the comfy chair ! Not x

  4. Thinking of you so much Caroline..
    I hope Friday goes as well as can be xx
    Much love to gorgeous Hope xXx Getter better soon xxx

  5. So sorry to hear about this. Must have been absolutely terrifying as well as exhausting. I am sad that Hope is not herself, but I hope that she recovers soon and that temperature and blood results are back to normal (normal for her if you know what I mean). Sending lots and lots of love. I can't imagine how it is for you all, but I truly am thinking of you and sending all my love and prayers for healing and peace.
    Rach B & her men xxxx

  6. Thinking of you caroline and your georgeous lil lady .
    get well soon hope. xxx

    Nicola x

  7. Thanks for all the lovely messages. Missing seeing u lovelies on Facebook. Roll on Easter!

    Sorry to hear that Lau. Poor lil man needs a break! As do u and Rosie! Hope he's ok now

    Much love to u all. Hope's still zonked :0(