Wednesday, 21 September 2011

Well, shortly after I wrote my last update, I noticed Harry looking a little rosy and a bit grumpy, I thought uh oh I bet he not going to be well.  The nurse came to flush his line and 20min later his temp shot up to 39.1.
Off to hospital we went to get checked out, and his temp stayed at 39 despite calpol. They took some bloods and as he was still neutropenic we were packed off to Manchester in an ambulance.

His horrid septicaemia bug was back, and after a bit of consultation with the docs, they decided his line had to come out, it is causing too much trouble.
Not that I wanted Harry to be ill, and not that I wanted him to go to theatre but I was a little glad, NO MORE TUBE YAY HAY
It just means that should he need more chemo (and I hope to god he doesnt) he will have to have it put back in). They took it out and as his temp had settled we were allowed home at the weekend, with strict instructions should his tempo go back up he goes straight back in, as his blood was still showing positive cultures when we left.

Slight down side, as he hadnt fed for a few days they put his nasal tube back in. This time on the other side of his face and he obviously hasnt twigged yet, as he still fiddles on the left side looking for it. It makes my life a little easier I suppose as we have 2weeks of oral anti biotics and they taste yak, so they can go straight down the tube. I will pull it out myself when he's finished them.


Tuesday, 13 September 2011

Well, I think I have commented a couple of times about Harry pulling his naso-gastric tube out, well it was getting to be a daily occurence. I probably caught him just before it came out like a million times a day before he finally triumphed. The staff at RLI were probably getting a little tired of him pulling it out (they were the ones that put it back in....constantly) the community nurses were putting it back in at least once a week too and to be frank I was getting a little pissed off too.

I think Harry does not like having a tube up his nose, can you blame him? so he has now been tubeless for 5 days. Knickers to Manchester and the dieticians. After the wrangle I had with my last visit and their being worried about him, where are they??? They havent rang or kissed my behind or nothing,  so I have made the decision to keep it out. He is now chomping happily away, and although he wouldnt drink the top-up milk he gobbles the porridge I make with it (har har Harry). The health visitor is coming on thurs to weigh him, if he hasnt gained then I may think about having it put back in, but to be honest Harry is soooo much happier without it, and its like I'm getting my baby back.

Got my update letter from Birmingham following his last visit, and they confirmed he's been put on the visually impaired register. Brings it rushing back like a hurricane, at least they are using the word 'regression' when they're talking about the tumors. Hip hip hooray

Saturday, 10 September 2011

A new waiting game

We have started a new waiting game. About 6 weeks of torture as we wait for the genetic results for Matthew Madeleine and William.
I took them to RLI last week and held them down whilst they took 5mls of blood to screen them for the RB gene that has gone wrong for Harry. Chances are they wont have it and this is the result the genetesist is expecting, but it has been heard that people can carry the gene without them actually having the cancer which they can then pass onto their children, so to make sure I can sleep a little easier we reluctantly agreed to screening the other 3. You can't help but play over the 'what-if' game in your mind whilst you wait the results and I am sure all will be ok, but til I have it in black and white I must endure the waiting game.

On a side note, William has had his refraction test to see if he is short or long sighted before they start correcting his lazy eye. This can be a sign of RB, but thakfully his initial screening (along with the other 2) was negative. I had to pin him down whilst they squeezed those awful eye stinging drops in and 20 mins later once his pupils were the size of saucers hold him down whilst the opthalmologist checked his eyes.

Firstly, his retinas appeared normal and he could see no RB, whoopee and secondly he is slightly long sighted in both eyes. But obviously it was so slight he doesnt need glasses so we made an appointment back with the other lady to start his patch treatment. This appt isnt for anpother 6 weeks, grr just give me the patches and I'll do it myself. He could be well into his treatment by then.

My children are going to develop an aversion to medical appointments, as up to now they have been subjected to pretty horrific things, of course Harry gets the worst of it all and I thank god as he is just a baby he will have no memory of it years down the line, that is if bloody BRB buggers off and leaves us alone for good. I shallnt hold my breath.

Friday, 9 September 2011

Well thats Matthew back at school and Madeleine in pre-school, the house is uncannily quiet. William is so enjoying having mummy to himself. I am feeling a little off, got a headache and that achy tickly throat and ears feeling, hope it doesnt amount to much, and sure hope Harry doesnt get it. He's starting to change into the grey faced mottled skin look he gets about day10 after his chemo, which all being well will be the last in this first tranche. Still got to keep an eye on temperatures etc for the next few weeks til he goes back for his follow up appointment.

He has got his appetite back a little and put on a little more weight. 7.2kg yesterday but that was fully clothed. Way to go Harry. I am panicking tho about an infection, the other day he did the largest no2 I have ever seen come out of  baby, and being breastfed still it still has the runny yellow consistency (sorry TMI) so it vesuviused out of the top of the nappy, right up to his armpit, the only thing it completely covered the end of his hickman line. I wiped it clean with alcohol swabs, but he had had it flushed the day before so the membrane on the end had already been punctured with a needle so I am a little worried some bugs may find their way into his line.oh and to finish it off, I laid him in his pram whilst I washed my hands, came back in and he'd pulled his feeding tube out again. grr Harry
Only one good thing may come of this and that he will get his line out early, but I don't want him to have the infection that goes with it. Oh well, back to temperature watching then.

Sunday, 4 September 2011

Where did all the time go....

I can't believe I have been so lazy and not put any updates on, it truly only feels like yesterday.

Anyway, since my last little moan my sis has had her op and has been discharged from hospital. Her bilirubin count reached 780 (thereabouts) and as you are technically jaundiced at 20 she was uber uber jaundiced. Her consultant had tut tutted and said he hadnt dealt with a case as bad since 1993 and could not believe the medical profession had let her go so long. 10weeks long. She has 5 weeks to recover and regain some strength and then she will go back for her gall bladder removal. Watch this space.

Anyway over to my clan. Matthew remains a cheeky monkey and has grown massively. I hope his uniform fits when he goes back next week. Madeleine's voice seems to have found a volume knob all of its own and William has swallowed a dictionary. The switch in his brain from baby babble to sentence talking has been firmly switched on. He is losing his babyness big style, and last but not least Harry.

Harry has had a successful visit to Birmingham with more laser surgery featuring. They were sure he wouldnt need more than the 6 doses of chemo at this stage but would be sure on his next visit. Some good news then.
He has gained weight and was really enjoying his food until he had his last dose of chemo, it always knocks him off and we will have to start again, but hopefully he won't lose any weight and will keep well. He was 6.9kg and thats massive for him. He's grown into 3-6m clothes at last. He has to keep the darned naso tube in til his follow up appt in 6 weeks.

I will return when I have some funny things to say. ttfn x