After her clean bill of health on the Friday, we had a few lovely days camping in weymouth. Hope was happy and well apart from teething a little. After being home for 2 days on the Wednesday we were just having a quiet day catching up on washing. About 11am, Hope started screaming. We gave her calpol and she remained inconsolable. Her feet were twitching like they were after the pool fiasco. An hour later, I rang the childrens unit to say I was bringing her in to be checked over. I told them I couldn't put my finger on what was wrong, but something was. I was hoping that we'd be sent away, having over-reacted. I was wrong. She was acidotic!!! Her blood was too acidic. And dehydrated. So she was admitted again. She was on iv fluids for 24 hours and was still too dry so they upped the fluids.
The second morning, the consultant on the ward rounds was dr Z. I've mentioned him before. He used to be her consultant. I thought about refusing to see him. He recognised Her, but obviously couldn't remember her from over 2 years ago. So when he said 'haven't I seen you before?' I was able to get something well overdue off my chest. 'yes' I replied. 'you were her consultant, and when she began fitting at 3 months old, you didn't believe me. I kept asking for an EEG, and you told me you thought she had colic. As it turns out, by the time she was seem by Ravi, she was in a constant state of epilepsy!' all that said in front of 2 SHOs and a nurse. remember us now? I'm sure you'll not make that mistake again! And I felt better for saying it :0) naughty me I know. But I do tend to hold grudges!
Ravi came to see Hope later that day, ....
Again I didn't finish this post and now can't even remember what Ravi said. What I can remember is we went home. Then yo-yo-ed back in and out a further 2 times. Apart from giving her IVs, there's not a lot that can be done for these new problems. Her blood work is all over the place: high urea, teetering on and off being acidic,high platelets... And a baffled consultant. So along with the previous aspiration pneumonia, and now the increasing need for extra fluids, the ball is rolling for a gastrostomy (feeding tube into the tummy).
And this last part broke my heart .. .Ravi's words 'this may just be the next stage of things :0(
We were discharged knowing her blood work wasn't as it should be, but knowing that she cannot spend her life in hospital in IVs.
She seems ok. Most of the time. I think. But it's nerve racking! We now have a hospital bag packed. Ready to go if we should need to. But touch woos, since I packed it, we've not needed it. We've actually done 9 days now without bring admitted. She's back in on wednesday for a check up, to see what her bloods are doing a rest dose of bucal midazolam (since she reacted so badly to the rectal diazepam)
Not the best summer! Far from it!
Pretty good week
1 week ago