2012 begins..update

So I have missed a fair few entries...I will try to rectify that this year.
The back end of 2011 really didn't give us a much clearer picture of what we are dealing with. We dutifully attended hospital appointments, got signed off from the chest consultants after the empyema and had lots more blood etc taken.
Results due in Septemeber hadn't arrived and in December, a week before Christmas I recieved a call from our consultant at the JR saying an appointment had been missed. Shocked I said that not as far as I was aware. The consultant then asked if Herb was in hospital!!! Ofcourse he wasn't...he was on the sofa watching Thomas the tank engine but why did she think he might be??? (worry number 1) .
The appointment was apparently very important as results were in & more blood tests required (worry number 2). Could she tell me what the results showed? No she didn't like doing it over the phone (worry 3). I wasn't happy with that so demanded some explanation. It was clear that there was an immune system deficiency which was linked to the ability to fight pneumococcal bacteria (cause of meningitis, pneumonia etc) and he needed immediate antibiotics to help protect him at this tricky time of year. (worry number 4).
Appointment now on Jan 24th, antibiotics 3 times a week...a smiley boy who is no longer my baby (3 years old in a week!) is coughing a little but seems happy & well. His legs and face were very blotchy today but this comes & goes. Just going to have to 'suck it and see' and that sucks in itself

Investigations

So it's been a while since I last blogged. We've had a summer of hospital appointments, blood tests, genetic testing, dentist appointments and even a visit to medical photography. The chest team have signed him off but sweetly said we can feel free to get our GP to ring them for advice at any time, as can we. Herb has been healthy & happy all summer (I am touching wood as I type as I am stupidly superstitious!). So far we know that his teeth are odd and not all out. This may indicate a syndrome of some kind. Photos were taken of his blotchy skin, red cheeks and teeth. He had lots of tests that returned normal but he does have

hypergammaglobulinemia which simply appears to mean that he can't retain vaccines and has a problem with his immune system. Waiting for more results in December. He has started Pre-school & potty training. All going well. He's been coughing the last few nights and his nose is running...ugh!!

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*

One day until hospital visit

I could really do without this. It seemed so far away when we left the JR but now it looms...just when he seems so well and the whole horror of hospital stays seem behind us.

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...

Sunshine soothes the soul

What a different place the world is when the sunshine finally breaks through and warms us all up. people smiling and friendly and no more coat battles with young children! Ahhh bliss!
It is over a year ago now since that awful day that meningitis struck down my Small. We let the anniversary pass without comment as it isn't a day I want to relive even in my memory (although sadly I do so often). It was when we were discussing the impending Mother's Day that I thought about how I spent it last year...in A&E watching my baby fight for his life.
This year I aim to spend every minute with all 4 of my babies and to spend it smiling :)

Dare I say it?

Finally we are meds free again and almost (we are never truly) rash/blotch free! Herbs has 3 teeth coming through , is chatting up a storm and seems to be happy & healthy. His sense of humour is shining through again...the boy is a comic genius...mmm, hope he doesn't forget his dear old mum when he is a famous comedian!
Yesterday was Red Nose Day and as I watched the children dying in Africa because their mums couldn't afford the bus fare to the hospital I was forced to think about how very different our situation might have been last March had we not had the NHS with the speedy ambulance, fab paramedics and amazing team at the JR hospital. This kind of service should be available to everyone wherever they live in the world.
This morning the sun is shining & Spring is definitely making her presence felt, good on her...it's just what Herbie needs and me too :)