A story of, for and about Hope. Our princess Honkey Plonk- Hope Olivia. One very special lil lady, who brings so much joy!
Saturday, 16 January 2010
How many doctors does it take to.....?
On Wednesday I took Hope to the doctor's surgery because she'd been unwell for a few days, and I needed to make sure she didn't have any kind of infection. Because of her mitochondrial issues, infections are more detrimental to her fragile health. I was Assured she just had a cold. From 11am Thursday, she cried for 4 hours solid, refused all food and drink, and had no wet nappies. Dehydration for hope is a big no no. So I called the children's unit who said to bring her in.
We were taken onto the ward (the bAby room (there wouldn't be much sleeping going on in there I can tell you). At 4 Hope was seen by a doctor who checked her over, said she was fine. Then produced a jug of dyrolight (a rehydration solution), and said when it was gone, hope could leave. Erm...but she wasn't drinking!!! Doh!!! At 8, we saw another doctor, to whom I explained that I felt the previous doctor had missed the point; Hope has a mitochondrial disorder, she needs her lactate levels checking, her bloods checking, we need to find out why she is crying and unwell. She checked Hope over, couldn't find anything wrong, but got the requested tests done. But it was gonna take a few hours to get any results, and we couldn't leave :0( In the meantime Hope needed her epilepsy meds... But she was refusing to drink ;9( knowing that these HAD to go down, I went to speak to a doctor. A mutual agreement was made to ng tube her. A massive defeat in my eyes, but preferable to the seizures if she didn't get her meds. This is when I met the next doctor. I immediatly warmed to him when he began asking questions about Hope's mitochondrial issues. Atlas, a doctor who understands!!! He gave us some really great news... Her lactate level was 4.7. The lowest it's ever been recorded. (it should b under 2, or more commonly under 0.5, but for hope, this is good). He checked her over, in preparation for the ng tube. Hmm... He thought she had a sore throat... Looked in her mouth, and saw pus at the back of her throat. Auntie Mary got to bring home an absolutely exhausted little girl, and one very relieved mum (me). So, it takes 4 doctors to diagnose tonsilitis. And because it wasn't diagnosed early on, this led to dehydration.
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.