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 :)

What did I do so wrong in a previous life?

We managed 2 weeks meds free and then came another rash...I tried to convince myself that it was just post viral but by Thurs evening, as it covered his entire body, I decided he needed to go to the GP again...
So here we are with aother ten days of penicillin for something the GP isn't quite sure of. Herbs has a red, warm to the touch, rash overing him. His hands are particularly bad and swollen :(
What did I do in a previous life to deserve such bad karma? Is it too much to ask for a germ free 2011? Thank goodness I am of a positive upbeat nature & not a depressive one as I think I would have collapsed in a heap by now.

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!

A new year, a new age, a new chapter

MY BABY TURNS 2!

Happy New Year! 2011 is already 21 days old and I am only just finding time to add a bit here.
Christmas was great, New Year was quiet. On Jan 12th Herbie turned 2. Dan & I chatted that day about the times last year when Herbie turning 2 looked unlikely. As I put that into print it looks like we are overreacting, being dramatic but it is so true.
Herbie greeted his 2nd birthday with new words, an ability to run, dance and amazingly NO RASH, cold or cough!!
What a year ... we are hoping that this year will be 'his year'...wow this little boy is made of tough stuff though.
In the local paper yesterday was an article about a family, living very close to my parents house, whose daughter contracted meningitis in Dec last year. she was take to the JR hospital too and miraculously survived after a long battle. Our wake up call was that this little tot lost the lower half of all 4 limbs at 2. Dan just looked at me and said 'God we were so lucky'
I know that every moment of Herbie's exisitence, since his conception, has felt like that :)