Monday, 29 August 2011



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! 

Friday, 12 August 2011

The 'P' word

The P word (aspiration pneumonia)

In my last post I did really skim over the fact that Hope had had a diagnostic skin and muscle biopsy, and following that, had been hospitalised with a nasty chest infection. It was only after she was better that the P word was mentioned. That it might have been a lucky scrape with it. I was glad that I didn't know, that that's what they were thinking!  So after 3 days in hospital, IV fluids and anti biotics, Hope was well and home again. We had a week of our usual busy schedule off therapies etc, but I decided she was well enough, and would love to go for a Honkey splash at the hydrotherapy pool session with her other special friends. Hope absolutely LOVES swimming! She goes crazy!!! And has recently even began to 'swim' (staying afloat and moving through the water in her own style). 
But half hour into the lesson, hope became distressed. This NEVER happens when she's swimming. I took her to the side of the pool to calm her and see what was wrong, and then I can't really explain what happened cause it all happened so fast...but she kinda went limp and changed colour. I knew something was wrong so got out fast! Then she was fitting (? but not her normal type- lots of twitching in her legs and her feet were going crazy, and during this hope was screaming and looking at me to help. It was awful!!!

And my nightmare was made worse by the fact that on this occasion, stupidly, I'd left my mobile and her rectal diazepam (epilepsy rescue medicine) in the car. So I had to quickly get dressed (I didn't dry myself!), so I could get help. As time went on, I realised I probably shouldn't even give her the rectal diazepam as this was a different kind of fit, and also because of her change of colour. So the school first aider called for an ambulance. Hope vomited (something else that's very rare for her- last time she did was a 999 job too). By the time the ambulance arrived, the nasty fit seemed to be over, but she was still very distressed and twitchy (with most likely left over epileptic activity). So off we went in the ambulance. 

Hope was still very distressed once we arrived, so was taken to the paediatric  resuscitation bay (not that she needed it at the time, just they have more than the basic equipment there). So she was wired up to heart monitors, sats machine etc. 

Her lactate level was 6.8- ridiculously high, and another honkey record breaker. Bearing in mind the chest infection the week before, she had a chest xray done in resus, which confirmed pneumonia. So the doctors planned out the course if treatment; IV fluids and antibiotics and arranged for her to go up to the ward. But whilst waiting for the arrangements to be made, Hope began fitting again. Nothing spectacular, not like earlier, but strong jerks, so the doctor decided after three and a half minutes to treat with rectal diazepam. As before (Hope's only had it in hospital, this being just the second time) Hope initially seemed to be quite enjoying it's effects and looked high as a kite!!! The fit still lasted about ten minutes, then she rolled around spaced out for another ten minutes or so, then she zonked! Proper sparko fast asleep! Then her Sats dropped!! So she needed oxygen to bring them back up. But then they dropped, and continued dropping even with the oxygen! Scary scary stuff watching the numbers going down and the docs looking to eachother, moving around quickly and efficiently. Then they were giving her an airway and  manually bagging her. The help having her airway open seemed to do the trick and eventually she was able to Cope on oxygen. So this postponed our trip to the ward for several hours, and when we eventually made it up 5 or so hours after we first arrived, it took a team of doctors and a  nurse to get her and all the monitoring equipment up to the ward.

The next few days were really a blur of stress with just being there in hospital, stress with canulas that kept not working, then doctors struggling to get new ones in, 12 hourly bloods to monitor her lactate, infection rates etc.  

I've lost track of days, but I'm certain she was admitted on the Friday, and let home on the Tuesday evening ( though not discharged as she was to return daily for IV and IM (intramuscular) antibiotics and bloods. 

We were told that the pneumonia was mostly likely caused by the general anaesthetic for her skin and muscle biopsy. The theory being that the GA caused muscle weakness, leading to Hope aspirating on food/drink, leading to the infection, and building up to 'aspiration pneumonia'. It's really hard to accept this, though I know it's right. She was fine previously. Pretty much. Though in hindsight she had given me a scare a few weeks earlier with her breathing after swimming. 

Though the infection was clearing up, this was thought to be a 'chronic' as in a long term condition, that may take weeks/months to shift. Possibly leaving her lungs, in a new, not so great condition. So before we left, I was trained to do chest physio, to try to shift some of the secretions, shown how to suction her secretions with a machine (that we now have one of at home). Because of her issues with her hydration and lactate, it was agreed that Hope needed extra fluids via an NG tube, so we were also trained on that. 
She was also prescribed a 'patch' to wear behind her ear to reduce the secretions. 
I was heavy hearted about the chronic condition, and really feeling like we were on a very slippery slope. 
Though very glad to be going home after her longest  admission. And just in time for Dolly and Max's sports day. 

(just realised I never got round to completing this post, so will gloss over whAt I can remember- it's been a mad few weeks. And not in a good way!)

We made sports day. The next day she went back in for bloods and got admitted for high lactAte again. Then diScharged a day later.
Our life for the following two weeks ish, evolved around giving meds, tons of fluid via the NG tube, dealing with NG tube problems such as it getting blocked, Hope coughing it up etc, along with every few days having blood tests to check her CRP (infection rate) , platelets (which were far too high) and lactAte to name but a few. I've become quite the expert now. And we feel too much at home at the hospitAl.  We also came under the community nursing team (as lovely as they all are, I saw this as a step in the wrong direction for us), and took delivery of and received training on a suction machine. 
The patch dried up Her secretions on her chest (but they increased her seizures so we had to stop using them) her lactate settled (or rather we settled with a 4 as being good enough), her platelets were slowly coming down, and her CRP was less than 1. She'd won! She bloody well fought off nasty ol' pneumonia, and she beat it! And as for it being chronic.. And me trying to come to terms with Hope's new chest state and noises... A miracle must have occurred, because 3 weeks from the pool episode, Ravi (her amazing consultant) listened to her perfectly clear chest, and based on this final set of bloods, gave us a clear bill of health. As clear as we are ever going to get anyway ! WAY TO GO HONKEY!!! <3