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*

Letter from out of the blue

Yesterday , totally out of the blue, we recieved a letter from the John Radcliffe Hospital. It was a copy of one sent to our GP regarding Herbie's recent pneumonia and empyema. It stated that

"The microbiology laboratory at the John Radcliffe Hospital reported a case of invasive pneumococcal disease but the serptype has not been identified.
The Health Protection Agency has issued the following collection of forms with this letter. Their advice is that Herb Taylor is given a single dose of pneumococcal conjugate vaccine 13 and it is recommended that the blood sample is taken a month after this dose to confirm adequate antibody response.

*sigh* ... what does it all mean...

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!

Hallowe'en bats, conjunctivitis, impetigo and more...

So seriously, just how much more can my poor little chap take??? As Halloween approached I thought back a year when the whole 'year of sickness began'. He threw up at a friend's Halloween celebration and it kind of went from there! So this year it was fab to see a very healthy, very cheeky and a very happy vampire bat winging his way around the Halloween party stuffing himself full to bursting with hot dogs and cake. Of course he wasn't completely free...he did have a rash...yes another post viral one...covering every part of his body! He was happy enough! (and totally covered in his costume so that paranoid parents didn't see it and insist that he was quarantined! ;)
Such things are short lived for my Small at the moment it seems...just a few days in to November and he has a diagnosis of conjunctivitis...nothing serious but obviously annoying and infectious and he was also given cream for two small red spots on his chin. Wierdly they had arrived very suddenly and just as suddenly they spread and soon his face, fingers, hands and one ear were covered in revolting crusty ulcers that quite frankly made him look like he had the plague! It was indeed the delightful and highly contagious impetigo. Again he wasn't at all bothered by it...infact he was most distressed at having to take his revolting smelling/tasting antibiotic four times a day!
It was worth it though..my scabby fella is looking cute and handsome again.
Today I recieved my Meningitis Trust newsletter in the post and decided to have a little flick through with a cup of tea. I read an article about a couple, Judi & Richard Mills, who had lost their 4th and youngest child Harry to meningitis on 26th April 2007 (my birthday!). I found myself staring at the lovely picture of the handsome 11 year old whose life was taken so suddenly and tragically by the evil meningitis that tried to take my baby too. He looked so happy. I had to go and watch Herbie, who was having his nap, just stare at him and thank my lucky stars that he was able to beat it. The article just seemed to have so many 'small & to others no doubt insignficant connections to us'...youngest of 4 children, a boy, treated at the John Radcliffe hospital, died on my birthday and his love of sport encouraged his parents to also fundraise for The Youth Sport Trust where my sister in law works and which is currently fighting for its own survival after the recent spending review. So many similarities and yet one fundamental difference...I have my Small but the Mills family don't have Harry...I shed tears for them today...I can't begin to imagine the void in their lives. http://www.meningitis.org/book-of-experience/harry-mills-25156

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!

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.