Last night, Evie was admitted to the paediatric ward again. She was showing no blink reflexes in Emergency yesterday evening and they were “very concerned”. We’d been sped through triage because she was having seizures as they triaged her and within five minutes of being seen by a nurse, we were in a bed in emergency. Shortest wait time ever.
You kind of expect your baby to blink when bright lights are shone in their eyes; unfortunately Evie didn’t flinch. I knew her vision was playing up and that she couldn’t see faces or toys anymore, but at home, lights were something she’d still react to.
Her vision has been changeable though, so who knows what will happen. We should have an appointment with an opthamologist today to try and work out what is going on.
In the meantime, she’s just had her first dose of anti-convulsants (phenobarbital), which has rendered her comatose. Little did I know that my first venture into the world of barbiturates would be with me drugging my baby. (Okay, so the nurse drugged my baby, but semantics.)
In any case, she’s had a few seizures this morning, a cluster at 2am (that I forwent recording in favour of trying to get her to sleep instead) and according to my shiny official piece of recording paper, over 30 seizures between 8pm and 11.15pm (three separate clusters). We were so lucky though, two doctors were in talking to me when she began one cluster and they got to witness them first hand.
I think that’s about all for this early in the morning. I’m sure that it will be a very busy day for Miss Evie, while they work to ascertain if she’s gone blind.
Wish us luck.
Holy Hell, Veronica.
Just cannot even try to imagine your head space right now. Much love and thoughts to you all. Keep us in the loop V xx
Oh love, Good luck, xxxx
I was thinking about you yesterday evening thinking that no new was probably bad news…sometimes I wish I were a more optimistic person…I am so sad that you are having to travel this journey.
My sister who was very sick when she was born was classed as deaf and the doctors thought it would be permanent. She did use a hearing aid in one ear in her teens but doesn’t even need that now….sometimes things get better….I am so hopeful that yours is one of those times.
Thinking of you every day and hoping for better days for you all.
best of luck, you are in my thoughts
Sending lots of love and light for you all. xo
Xx
Good luck today.
I keep thinking about Evie and looking for you in my twitter feed to see what’s going on. I cannot imagine how scary & frustrating all of this waiting is for you & your family. I’m hoping my hardest that someone has some answers for you in the near future.
Darling V,
I have watched this story unfolding and my heart is full of love for you and little Evie.
I hope for nothing but good things and that you find a way to crash through this awful time.
Hugs babe.
Veronica, hoping you can get some answers, and more importantly, some real help for your baby girl. Thinking of you and your family right now.
Will be thinking of you all today. Hugs
ALL OF THE LUCK!
I feel so helpless… Xxxxxxxxxxxxx
Sending big hugs to you, and positive thoughts and wishes to your dear little one for a full and quick recovery. Make sure you write down any questions you think of so you remember to ask the doc’s when they’re around. x
I’ve been reading along with all of your posts – but not commenting because there is just nothing I can say to make this any better for you guys. I have tears in my eyes every time I think of your beautiful tiny baby going thru this – and you watching her. Stay strong and I hope you can feel all of the support there is out here for you.
Will be thinking of you all and Evie today. Wishing for an easier day for her and answers to come soon xxx
xoxox
Thinking of you and your family Veronica. If little Evie has even an ounce of her mother’s spirit – she’ll get through this stronger than ever xx
I hope today brings hope Evie isn’t blind and the meds stop her seizing. I can’t begin to imagine your worries.
Oh no, I too have been following and I also just wanted you to know my thoughts and healing love are with you. Stay strong. xxx
omg. Just … love.
Nothing to offer but hugs, wishes and thoughts … and you have all of those. I so hope you get some answers today and that the medication helps Evie in some way.
As my Nana used to say, ‘cross your fingers and spit’ and hope like hell this all has a good outcome. Thinking of you all. Hugs.
Just cannot imagine what you are going through – wishing you the absolute best of luck that they find out what is going on soon…so many people sending good thoughts your way.
I feel for all if you.
From personal experience, try to get a pediatric optho. Regular opthos tend to freak over tiny babies, at least my first optho did.
Best of wishes to you all.
you are all in my thoughts and prayersxx
God, just please help this family. I just don’t get how this can possibly be happening!! 🙁
Sending love and light and much love as you walk this scary road
I’m sure right now you are doing your best just to keep it all together and to be strong, but remember that you are allowed to freak out. Someone else can be strong for a little bit if you need them to. I will be keeping your whole family in my thoughts and prayers and will be praying that the doctors have wisdom to figure out what is going on and how to treat it.
Hugs & thoughts
Big ((HUGS)) to you and your family, You are in my thoughts. xoxo
Can’t even think of many words to write, I’m just desperately wishing you all the best. I hope you all pull through this. x
Thinking of you guys, hoping for answers and improvement.
Oh Veronica, that is so scary to even read about, so I can’t even imagine how you must feel…
I so hope that you get answers soon and it gets better!
Fine
I am sending all the aching love in my heart for your little girl who I have never met. A-M xx
Perhaps because of the seizures there is some sort of pressure on the optic nerves?
I’m hoping this is something fixable.
I remember my grand daughter being in a drug induced coma at 5 months old, it’s an awful thing to see.
Just read your Mum’s post and wishing you all much love x
Thoughts and prayers with you each day xx
They have to be closer to knowing more now. Still sending all our best thoughts your way. And again, call anytime you need to, I’m here if you need to chat:)
Thinking of you every day ((hugs))
Wishing you all the luck in the world xxxxx
haven’t been on here much but I am keeping up to date with your happenings and my thoughts and prayers are with you and your family V. xxx
Huge hugs to all of you. God, I just can not imagine what this must be like. Praying for your precious daughter, that all this is reversible and that she will soon be as good as gold. Much love xxx
Oh, Veronica. I so wish I could do something for you all. Hugs to you and Nat and little ones. X
All my thoughts and hugs are with you and your whole family!
Thinking good, seeing thoughts for you guys.
Lots of love, thinking of you xxx It must be so hard, I pray it all gets better for your daughter.
Just reading your updates about your little Miss nearly has me in tears … I sincerely hope they find out what is going on with your precious little girl. Thinking of you all and sending big hugs as well xo
Am always reading on my phone on the train, squashed into a tiny pocket by squillions of slim uniform Chinese. It doesn’t make for ease of comment-leaving.
I’m hoping very hard for you, and thinking of your little E. Beyond hard times V 🙁
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