Wednesday, 24 August 2011

I'm sick of smiling and being the amazing person everyone says I am. You still get a bullet in the chest when you see your babys name next to a statement which reads 'severely visually impaired (blind)'.
I know it doesnt mean he will end up being totally blind but when you get the medical guys talking about it you know fighter pilot will never feature in Harry's CV.

Saturday, 20 August 2011

Well the said weigh in opened a huge can of worms, and my usual calm composure got to the verge of turning into a rampaging monster. I HATE HATE HATE HOSPITALS AND BRB AND CANCER AND WEIGHING SCALES.

I'm calm again, lol. I was quietly confident that Harry had gained a little when some strange health visitor came, plonked her scales on the carpet and weighed him. Scales should be on a hard surface as they sink into the carpet but no, she knew what she was doing and looked at me like i was a complete moron. So according to her wrongly placed scales he had actually lost a little weight and was back at 6.12kg. So the inevitable phonecall followed to Harry's dietician in Manchester who voiced how worried she was that he was so little and she would have a word with his consultant.

She rang back the next day and said he would have to go see Eddy his consultant so sort a new diet plan. I queried this as we are due in on Tues anyway and surely a week wouldnt matter, but they are so worried they wanted to see him. So I opted for thursday, sorted childcare and decided that I would start weaning him (the hosp told me to hang fire whilst he got settled on his top up milk and would advise when to start) and increase his top ups from 60ml to 75ml. He has 5 of these a day.

He quite enjoys his porridge, and have moved onto apple flavour too, yum. Scoffs the lot. Not yakking up so I think I got the balance right, He has some solid food 3 times a day. ANyway, late weds night the hosp rang to say the transport company couldnt pick us up so had to cancel. Hooray. Childcare cancelled. Thurs morn and Eddy's secretary rang asking if I could make my own way to the appt. No, my care needs attention and I darent risk it on the motorway thats why we needed transport. Ok, can you get here tomorrow (Fri) err NO my car etc etc dur brain. I explained that he was in Lancaster fri morn anyway having blood count done, going to Birmingham Sun/Mon and we back in Manchester tues, so that will have to do. I have oincreased his feeds and started weaning. Oh ok, I'll let Eddy know.

One hour later, Eddy's nurse Sue rang. She is lovely. She asked the same question. FFFFFFS. I explained it all again to Sue, I can't make appt today as I have cancelled childcare and have no transport etc etc. When I went through what he was eating she agreed that there couldnt possibly be anything more that could be done that wouldnt wait til tues. She would let Eddy know and not to worry.

So, getting on with things I nipped to the shop when my phone rang. I nearly didnt answer it, but not one to be rude I did. This time it was Eddy. Yes, he was actually ringing himself. My heart sank, Manchester wins a medal for persistsance I give them that. He voiced his concerns about Harry's weight and that he needs to see him as he couldnt let it go on and Tuesday was 5 days away, so again I ran down my list:...

  1. I have cancelled childcare so cannot make today
  2. He is in Lancaster friday anyway, so am sure they will weigh him, plus I had promised the others I would take them out, and I am sick of them always feeling like they take second place to Harry. I know Harry is ill but he is not the only one in the family. If it was for treatment I would go, but seeing as it was just for a meeting I am not disappointing them again
  3. I have started weaning as I am still waiting for you guys to give me the go ahead and have increased his top ups to 75mls
  4. I am in Birmingham sun/Mon so I will come to Manchester as planned on Tuesday.

He went on and on and on how he wasnt doing his job right b lah blah to the point I got majorly upset and teary (yes this was all in the middle of the co-op) until he conceded and said he would get the dietician in Lancaster to see him while I was there getting his bloods done. He would fax his new plan to him to pass on Ok, thank Heavans for that.

The Manchester dietician still had to ring later on thurs just to make sure I had been contacted by absolutely everyone, she liked what I was doing and said 'see you on Tues'.

Anyway, Fri morn dawned and off to Lancaster we went. The Lancaster dietician couldnt actually come but he did say he was more than happy to have Harry as a come and go patient to help monitor his weight and feeds etc if it would help. Super, things were looking good. Harry weighed in at 6.52kg, so he had a good gain from the wrong weight on Mon anyway. Had his bloods done and off we went. Oh yes, the feeding plan. It was exactly what I had myself put Harry on, his usual breast feeds, weaning and 75ml top ups. SO what was all the sodding fuss about, they were stressing me out about my non-attendance to talk about what I had told them I was doing.

So you can imagine I was majorly unimpressed, especially when the lovely nurse from Lancaster rang with his blood count and told me that Paul the Lancaster dietician had called Manchester to offer his help going forward. He was told that Harry was categorically under the care of Manchester and thats where he would be staying. Slap on the back for Paul when he fired back 'so its okay for me to see him at the drop of a hat when it suits you'. He wasnt wanting to take all of Harry's care, just to help out as someone local I could get to easier if I needed to. He told them to shove it (but to me secretly he is there whenever I want to ring him)
Paul you are a superstar.
Anyway, his platelets were 315 and Hb 10.6 so Birmingham would be okay, but neutrophils still only 0.2 and as they need to be at least 1.0 he prob won't be having chemo on Tues, but I will still have to go re weight etc

God, that was a long rant. I am so fed up with hospitals now. BRB you can pack your bags and disappear. You have outstayed your welcome, not that you were ever invited.

Sunday, 14 August 2011

Been a pretty non-eventful couple of days really. Harry of course had pulled his tube out so a quick visit to hospital today to have it put back in was made. He doesnt like having it put back in, you think he would have learnt to STOP PULLING IT OUT THEN. He's going to be weighed again tomorrow, hopefully he hould have gained a little.

My niece and nephews girlfriend are organising a sponsered triathlon to raise money for Macmillan Nurses mainly for Harry. What a lovely thoughtful thing to do. I set up a 'just giving' page for them so they can collect on-line donations, and we have had £160 donated already. The triathlon isn't til October. The lovely messages that have been left by complete strangers is touching, it brings tears to my eyes xx

On a down note, despite having a op to put a stent in to start draining the shit out of her blood, Rachel remains as yellow and as itchy as ever. A few days she was told then she should see some effect. She is going to ring them tomorrow for advice. Its getting her down.

Friday, 12 August 2011

Well after a very long day, we were collected at 7am and home at 9pm, Harry now has his platelets. They did a fresh blood count in case his body and made so many in the 2 days he didnt need his transfusion, alas no. His count had actually dropped to 2. Scarily low. Lets hope in the 10day life span of these transfused ones his little body starts to make their own. Of course he had the nurses falling at his feet too.

My niece and nephew's girlfriend are organising a sponsered triathlon to raise money for Macmillan, mainly because of Harry. What a lovely thing to do and I hope they get loads of backing.

Wednesday, 10 August 2011

Harry had his bloods done, and as I thought his platelets are low, but lower than I thought. They should be 150, and his are 13 so he needs a transfusion. His Hb level is also low which explains why he's so pale.
So yes, we're off to Manchester in the morning. Hopefully they'll be prepared so we won't have too much waiting to do, but not holding my breath.

I managed to steal away the kiddies comforters to wash, they were extremely yukky and stank. Probably the source of Harry's infection lol. Out they came lovely and clean and fresh smelling. Madeleine looked most unimpressed and didnt really look at hers for the rest of the day. She did ask 'when is all the clean going to come off'

Rachel still feeling crap despite her op, but they told her it could be a few days for the jaundice and itchin to start subsiding. Matthew was dead impressed with her colour especially her teeth which she'd painted white. She found it funny thank god. He was also disappointed that he'd missed seeing Madeleine tumble down some of the stairs at my mums, knocking william over as she fell. He asked if anyone had video'ed it on their phone so he could watch it. I chastised him, everyone else thought he was funny.

I took him to get some new trainers from Clarks shoe shop. I knew he needed some new ones as he'd just been fitted for new boots, the shop assistant (also a childhood friend) asked casually if Madeleine and william wanted a shoe check, imagine my shock when they had both grown a full shoe size, never mind just a half. So £100 quid later they were all kitted out in new footwear, all with flashing lights in. I am still recovering from the the fastest goodbye to £100 in history, and from the fact I'd been jamming my kids feet into shoes that were a size too small. Just cause clarks say feet grow every 12mths kids doesnt mean you have to oblige. God help me when Harry needs them aaargggh.

Tuesday, 9 August 2011

Harry has stopped being sick hooray, but he was weighed yesterday and has lost roughly half a pound boo.
Hopefully we can start building him back up. Going to get a blood count check today, have a funny feeling his platelet count will be very low (despite him being at day 12) as he has a few bruises. They may want to give him a transfusion, maybe check again next week and see if his little body can do its magic by itself I don't know.

He must be feeling a bit better as he kept rolling off his changing mat last night, and yes it was on the floor lol.

Sunday, 7 August 2011

Saturday, 6 August 2011

William is 2 today x

wow, where did those 2 years go. It doesnt seem 2 minutes since he was born, well actually thats a lie cause of everything thats happened since it also seems like a lifetime.

2 years ago today my darling William made his appearance. Rachel was my birthing partner, and after several false alarms (even more than with Harry) she became anxious as she was going on holiday at 6am on the 6th August. So 10pm on the 5th I rang her and said 'its the real thing this time' so off we went to hospital. Despite the midwife saying he would be here by midnight, naughty William decided to hang on a couple more hours and arrived at 2am. It was to make sure I went through the motions of 'I can't do it and 'I want an epidural' but Rachel was a fantastic partner and was the first person to see William and hold him. I am sure the black top was prop not the best colour to be wearing and she jolly well made sure she was wearing an apron with Harry! and at 3am she rang Darren to bepicked up. She must have been knackered as they dutifully went on holiday at 6am.

I wish I could wave a wand and keep William as he is. He is the most loving cute cheeky cuddly little boy ever. Hope you have a lovely Birthday xxx

Harry is at day 10 and is looking pale, I am a little concerned as he is being sick quite a lot and not really wanting to feed. I have started him back on his anti sick meds to see if it helps, really don't want to ring the hosp as I can imagine they may want to see him if it doesnt improve. Come on Harry, all that extra weight you put on will be falling off, I know I can give him his top up Milk down his tube, but thats only ok if it stays down. Am sick of washing sicky sheets and babygros, makes a change from pooey ones I suppose.

Wednesday, 3 August 2011

Where has my Harry gone??

This latest round of chemo really has disagreed with Harry. Probably a combination of being ill, then chemo then laser all together but my happy gurgly baby has been replaced by with a sad crying hurty baby.

Its as if he is in pain, especially when you pick him up, maybe he is achy and his skin hurting, the nurse said this could be his chemo and maybe give him calpol to see if it helps. His temp is okay thank god.

I am also FED UP of washing pooey clothes so I am thanking god he has stopped his anti biotics and maybe this will stop his poo being uber runny and coming out constantly.

That aside, he seems to be seeing more, I dangled a toy over his head and he moved his head and eyes following it. Something taken for granted by most people, but to me it was a wonderful thing. They have been able to start lasering the larger tumors in his eyes along with all the smaller ones. We have pictures of the before and after to date and the difference is amazing although the blackened calcified deposits look horrendous  but who cares as long as the tumors are dead. I have a feeling his chemo will be extended, as they still hve a long way to go and he only has one dose left and they did say it would be increased if need be.

I must say good luck to my sis who has an op today to remove the offending gall stone which is causing her anguish and yellowness. I know she is scared and who wouldnt be, but I hope the relief will be instant and she can get back to her normal self. Good luck Rachel xxx