A story of, for and about Hope. Our princess Honkey Plonk- Hope Olivia. One very special lil lady, who brings so much joy!
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.
To say that Hope was a much wanted baby would be an understatement. Longed for, dreamed of and needed would be closer to the truth. Her big brother Sam died on Christmas day 07, leaving her Mummy, Daddy, big sister- Jordan, and big brother Max sad beyond words. Four months after lil Sam's death, and we were blessed with another pregnancy. Surely everything would be ok this time around? Sam had died of a diapramatic hernia, so knowing the increased odds of having another baby with CDH, we waited before breaking the news to Jordan and Max. At 13 weeks gestation, we were given the all clear and told the baby was a boy. So why was I dreaming about a little girl called Hope? We broke the news to an excited Jordan and Max. This is when the growing fetus was named 'Honk' (will explain this at some point). After 2 weeks of delight our bubble was burst. There was something wrong. Here began our rollercoaster. Baby Hope was diagnosed prenatally with cerebellum hypoplasia and ventriculomegaly. We were advised to...I can't even type it, but obviously we didn't. Fot the first 3 months Hope appeared to be 'normal' - against the odds, but as time went on, it is becoming clear that all may not be as well as it could be. Hope is now globally delayed, and has recently been diagnosed with epilepsy. Did we ask for a special child? No, but we have been blessed with one. Would we turn back time? No. Hope has bought light where there was dark; smiles where there were tears. I'm sure we will learn more from her than we will ever teach her. Who knows what the future holds for Hope. But I swear, I will always do the best by her and she will know love! Update: Hope has recently been diagnosed with a mitochondrial disorder (high lactic acidosis). Due to the fact that any findings will not provide cures or even treatments we have declined further investigations (skin and muscle biopsies seem too much ).
I am happily married to Chris. I am Mummy to 4 beautiful children, but my beautiful 3rd baby is in heaven.
I am in my 5th year of a BA degree in Childhood and youth Studies. I enjoy my children, reading, studying, blogging, facebook, my friends, and if i get a spare moment, my newest hobby is knitting pretty little things for my smallest princess.