The trouble with appointments is...

It's taken me a few days to compose myself enough to write this entry. I spent a few days prior to Herb's hospital appointment worrying about what they might say/find. He was due for a chest x-ray, spleen scan, blood tests and general check after the pneumonia/empyema. Would we find that all of this was coincidence? bad luck? Would he have an immune deficiency that needed immediate antibiotic attention that may continue for years? How would he react to blood tests, scans, x-rays when he was well? My mind was a whirr of questions...
So the day arrived, appointment at 4pm. My mum was in place to look after the other 3, Dan was off work and off we went. We arrived early, waited and were first called at 4.20pm for weight, height & prep for bloods. Herbs took it all in his stride. We were called at 4.30pm...went over all of the old ground again, asked how he was now, commented that he was in 91st centile for weight, (Herbie promptly asked for chocolate biscuits on the mention of food ...the shame...I only had them so that if he screamed during bloods I could bribe him!) The consultant then filled out the forms for the scan & x-ray and said 'oh sorry it's nearly 5, too late now, you'll need a new appointment!!!!' GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR!!!
She then made comment that the appointment was late, I felt implying that we had cancelled a previous one, which we hadn't. Then she said that he should've had the vaccination mentioned in the letter dated mar 27th by now. I told her it arrived mid April and then Easter etc. She said well no point in doing bloods...
Ok I am getting a bit angry just typing this again...waste of time...
Anyway he now has 3 separate appointments...we may have answers by August... *sigh*

Just when you feel safe...

something happens to turn everything on its head again!
Last Sunday, after a couple of days of an on and off fever and intermittent lethargy, I decided to take a quick trip with Herbie to the out of hours Dr. What did I expect? To be told he was coming down with chicken pox? (Rufus had just had it so quite likely). To be told he had a chest infection? A virus? To be given antibiotics or told to just keep him dosed with calpol & nurofen? Any of those would have been expected outcomes BUT the Dr said 'I need to ring the Paediatric team at the JR about this, it sounds like 'at least' a chest infection' My heart sank, my stomach leapt into my mouth and I knew a trip to A & E was on the cards...again.
We arrived at A & E around 8.15pm, a chest x-ray and a cannula later and we were quaranteened in a room(due to exposure to chicken pox) whilst Herbs started intravenous antibiotics and we waited for a room on a ward.
At midnight we were given a room on Robin's ward , it was actually a sleep study room, they were short of space. The doctors kept commenting on his O2 saturation, apparently it was pretty damn good for a 2 yr old with only 1 working lung! The Dr who came in to explain that he had pneumonia took one look at us and said 'I remember Herb...he had meningitis last year didn't he'?' (she had looked after him then...this wasn't the last time he was recognised!).
Over night Herbie stayed comfortable and had to be given some oxygen at times but he didn't complain...he's such a star!
The next day they moved us to a normal ward claiming that he was no longer likely to get chicken pox & they needed the room. I tried to explain that he could still get it but was not listened to. The response was 'I know it's nice having your own room but we have someone who really needs it'...mmm...she would regret that later!
The following day we walked to ultrasound and Herbie was made to lay on me whilst he had a scan of his chest. I saw the pictures on the screen...hardly any lung visible and loads of fluid. It was official, he had empyema and would need a chest drain put in later that day!
poor little chap...he's just 2 for goodness sake and he has had so much crap already!
The chest drain was in few hours later after we were moved to Drayson ward, where he stayed after PHDU during his meningitis. We were given a roo again and told he was NOT to come out due to chicken pox possibility! The infection control person arrived and was not happy that we had been put in a 3 bed bay on the other ward...
So we endured Monday to Saturday at 2.30pm in one room. The TV goes off at 9.30pm, no hot drinks on the ward...didn't see Rufus for almost a week and only saw Lily & Kitty once.
The staff as ever were fantastic...they make life comfortable, they smile and laugh with you even though you know they are really busy & under pressure. Even with the chicken pox blip I wouldn't complain about the JR ever...I just always feel lucky to have them on my doorstep.
Oh and the chicken pox? Yes, they arrived to complicate things on Thursday night! Why people are so eager for their kids to get chicken pox is beyond me...it can be horrific (as the consultant explained). Luckily they gave Herbie something to calm it so he still only has a few spots.
One of the infectious diseases Drs also visited us again, he'd been involved in the meningitis episode, he wants to investigate Herbies immune system. He said it may just be bad luck that he got 2 invasive & serious bacterial infections but it may not...

We came home today with a bag full of drugs to keep him going. I missed my girls & Rufus so much. It's great to be home...but whether I will sleep without knowing that his sats, temp and heart rate are being monitored every hour is beyond me!

spots and memories

It's been a while and lots has happened. Herbie has been doing well, running about, being amusing and generally in good health. Then with an outbreak of Chicken Pox (the one thing we were told to avoid) we tried hard to avoid them.
Herbsie had his MMR finally after all of the delays and was a good boy, then 6 days after he had a fever and 14 days later woke with a rash that covered his whole body! A measles rash! Poor spotty boy...
We are also trawling through our memories of our time in hospital with Herbie as good friends of ours are in with their 5 year old who is ill with no diagnosis! Being a parent is so damn hard on the soul at times, thank goodness children are also the best tonic!

Fund raisers, walking and tears

So we made the local rag & the cake sale & the community coffee morning fund raisers were a great success. Thanks in the main to all of my fab family & friends who baked and helped out. £307 raised!! Woooohooo!! It rounds off this whole 'meningitis episode' nicely for me. I feel like we have helped raise awareness and £'s for research & others.

It's so wonderful to be on this side of the illness but for so many this side never happens :(

I happened upon a programme on BBC 1 last week about a medical team and there was an 18 month old on there being admitted in a coma with meningitis. I sobbed the whole way through it...the emotions which on a daily basis seem so under control were suddenly unleashed and wild! I relived every moment with the parents of 'Freddie' and felt the ups and downs of the emotional roller coaster on which they travelled, just as we had a few short weeks ago.

So what about Herbs, my little trooper, well once again my baby has learnt to walk, twice now in his short 16 months here on Earth. Heck some babies don't manage to do it once in that time. He amazes me every day with his recovery.

Newspapers and photographers

What a week! Elections, hung parliament, school closed for 2 days (bank holiday & a polling station). The most exciting thing has been the interest by the local newspaper in Herbie's story and the girlie's fund raising cake sale! We have the local press photographer arriving tomorrow to get a picture of all 4 kiddos to go alongside the article. Lily & Kitty are beside themselves with excitement and I am left wondering if Herbie & Ru will 'play ball' or go wild with independence! Time will tell.

First week of work over...

Went back to work this week. My class of 29 year 1's were so lovely and gave me a very warm welcome. The staff were great too. The normality felt refreshing but I did miss my Smallie and Ru as well as my big girls. Being a working mum is never easy but if you enjoy your job, get satisfaction from it and know your children are happy with those looking after them it makes it bearable and at times really enjoyable!

Herbie continues to make daily progress. More steps , more interaction, more food!! Less separation anxiety (finally this week we can put him to bed awake and leave him to go to sleep). Ru is now totally potty trained at 2 years and 4 months...he's a clever chap and has been really easy to train.

So we are now into a Bank Holiday Weekend and really looking forward to time with friends and family...rain or no rain!

Best birthday present ever

Today was my birthday and what a great day it was. We had Herbie's first hospital follow up appointment at the John Radcliffe Hospital since he left over 3 weeks ago. Meningitis is still so very much in our minds as are those three awful weeks when he was in hospital. It was odd returning and so many memories and emotions were stirred up. We talked about how Dan felt as he arrived in the ambulance with a lifeless Herbie and how frightened we were during the first few days. To look at him today you wouldn't begin to comprehend how ill he was. We saw his consultant Dr Shelly Segal. She was thrilled with his recovery. We honestly can't thank her and her team enough...what a fantastic Dr she is. She said she would see him in 6 months if needed!! Then he would be discharged. She also said it was NOT the HIB meningitis as originally thought but that they would now never actually know which strain it was...who cares, he's well again!

To top it all he took more unaided steps in the hospital waiting room.

Tonight we went out for a meal. The two of us just talked through the whole illness, hospital stay again...

To talk is to heal :) What a great day.

Road to recovery

When do you know that your recovery is well and truly complete? Herbie is probably 95% back to the old Herbie, pre meningitis. I watched with a warm heart as he played with Rufus today, babbling away and then the two of them singing and doing the actions to Wind the bobbin up!

I sleep well at night even though he is now back in his cot in his own room. We need to get him back to being put up to bed awake, something he was very good at before he was ill.

Monday we have his first consultant appointment at the JR hospital. I have no idea what to expect but as it's my birthday that day I hope that the appointment will be positive! Then on Wednesday it's back to work for me!

My sister and 2 of my sisters in law are running a 10K run in London to raise money for the meningitis trust and my twins are holding a cake sale to raise money for the PHDU at the JR.

So much of our day to day lives at the moment still revolves around what happened and I am retelling the story at least 3 or 4 times a day!!

Life is returning to normal but not an hour goes past without a reminder of what happened...

Days like these

A short piece today. Another fabby day with just my boys (all 3!). Girls at school then to Grandma's for tea! The weather makes life so much more enjoyable. Herbie went on the swings for the first time since being unwell and he giggled so much. It was great. The biggest excitement though was when I caught him standing holding a toy, and not holding on or leaning against anything...he seemed oblivious to my elation! We are getting closer to walking...I just know it. 4 days until World Meningitis Day. I can't believe that this time last year, in fact this time 6 weeks ago, I wouldn't have known it existed.

4 became 2 for a few hours

So back to school for my older children today...the first time since we were reunited. I was surprised by Ru's reaction (my 2 year old) who cried and said 'No Lily & Kitty gool...please...make them come a home'. Perhaps he was as unsettled as I was by the first separation since we returned from hospital? The girls however couldn't wait to get there. School life for 7 year old girls involves lots of gossiping and planning, they had much to do! There were the new haircuts to show off, the celebrity little brother to parade to friends now he is out of hospital, brand new shoes and holiday escapades to recount. All this AFTER copious amounts of hugging and jumping up and down excitedly as they were reunited with best friends.

What milestones today? Herbie spent his first night in his own cot in his own room since being ill. It wasn't as bad as I feared and I didn't even have to get up to him in the night! 7pm-6.30am...almost back to normal! He did lots of cruising of the furniture and there was a look in his eye that seemed to say 'I want to walk...I will soon'. His strength is returning and so is his confidence but my favourite thing is to see him returning to his sociable self. He is smiling at other people more readily and waving at passers by. He held out his arms to Grandpa to take him for a cuddle which I know warmed Grandpa's heart!

Todays biggest fear? That it will happen to one of my other children, that meningitis will strike twice...I try to push the thought to the back of mind but it keeping popping out unexpectedly, like an old jack in box :(

The sun is shining, all is right with our world at last

There are days when life with my children & husband is so idyllic that I want to burst! Today is such a day, a day I wanted to spend just with them and so we did! We've shopped a little, watched the narrow boats lazing on the canal, eaten heartily and just enjoyed one another's company. My camera hasn't stopped snapping!

It's a far cry from 5 weeks ago (Mother's Day) when we were torn apart by an ambulance arriving around 6am to take our youngest, 14 month old Herbie, to hospital where he was urgently treated for bacterial meningitis. If your child has ever been whisked from your arms by a paramedic as you screamed hysterically after them you'll have some idea of what I went through that morning, if not I hope you never ever do.

Meningitis ... what do you think of? Rash? The tumbler test? Loss of limbs? Death?

None of these, thankfully, feature in our tale. (which you can read here...http://www.meningitis.org/book-of-experience/herbie-taylor-36892). Meningitis hit us like a free rolling truck and dragged us along for almost 3 weeks before finally letting us go. Our 3 other children, 7 year old twins Lily & Kitty and 2 year old Rufus were split up, living with our respective parents and we ate and slept in the walls of the hospital.

So today we feel like we were almost the family we were BEFORE meningitis. I say almost because Herbie is still not walking (he was before) but he's cruising again. We will also never truly be the same family...it's changed us despite the happy outcome. For a start I'm blogging...here is where I will note things about our family as we leave the Meningitis detour and head out back on our journey .