Many Nights

There is no where that feels so alone as the solitude off a dark silent 3.00am when the rest of the world must surely be asleep except for my crowded fuddled brain which is trying to fight off and file away a million and one thoughts that refuse to bed down for the night.

Updates

Hubby has an endoscopy booked for next Friday (camera down inside) The doc wants to look at his pancreas. His Blood Sugar levels have been up and down again the past few days, but they have been lower than late which is good. His eye site has also improved. We both went for eye tests last Saturday and I have to collect my new specs today. However the optician checked his eyes but refused to prescribe him new glasses as his BS levels were not stable and he hadn't started the Insulin injections, telling him that until he had got the levels more stable and the insulin doses had been settled, his eye site would vary daily, something which has been born out this week.

He knows that he has to really get to grips with this now and is also very aware of what the docs may be looking for at the endoscopy. Whilst working away he finds it incredibly difficult to cater for himself and invariably like most builders lives on rubbish food during the day. I just keep re iterating how much healthier he was when we were out in Oz and were working together. We would take breakfast in with us, cereals, fruit and mid morning snack was home made bread toast, lunch was always a big salad with some pasta or rice, fruit or yogurt. Afternoon snack was fruit, yogurt or a couple of crackers and then tea was something like chicken, salad and a jacket potato. I'm not saying it was just because we were in Oz, but the fact that we were together and I could help him control and balance what he was eating.

Mind you the sunshine, swimming each day, chasing two grandsons and less job stress I think helped a great deal. When we came home he went straight back to doing what he has always done here and lost the good habits he had been building up. I just hope that its not too late to reverse them again.

I am still trying to get another job back out in Perth, but this week cant really focus on things clearly, just want Himself to be OK. The job I started here lasted two days and then the ceiling fell in, literally, buts that whole other story for another day. Suffice to say, if you are insured by LV, then I wish you the best of luck with any insurance claim you try and make with them.

I have never made a house or contents insurance claim in my life and estimate that the amount I have paid over the years must come to about 15000 pounds. I seriously think now I would have been better putting the money in an ISA and using it if I ever needed it for a house problem, my current experience is that insurance is no help what so ever when you are at the time when you need the help the most.

Rant over, off to clean out the rest of the shed which didn't get done before Xmas, go and get my new glasses and WEAR them whilst driving and then get my back side down to sunny Kent.

Have a lovely weekend! Thanks Jan and Sarah, your comments mean a lot xxxxxx

Brothers and Himself

Two weeks ago hubby lost one of his brothers, another one had died just before we went out to Oz. One had cancer and the other one Rick had a massive heart attack and died on his own, alone in his new council flat that he had just decorated and was so proud of. When we were out in Perth we talked often on Skype and he proudly took me 'on a tour' round his new flat showing me his decorating and was chuffed to bits when he bought a new saucepan set. 64 years old and pleased because he had new saucepans  - sort of puts things into perspective doesn't it?

We went up to Scotland a month ago and spent a lot of time with Rick and we had a lot of laughs, for my part it was great to sit and listen to the stories from when they were young. We left Rick laughing when we left, but that was the last time we were to see him, a week later he had gone.

And then, the family fighting started. I won't go into details but it involved a step daughter that he brought up, children (now in their 30's and 40's  that he didn't bring up) his sister, two nieces, one nephew and a post mortem that was scheduled, which after a week keeping us waiting, did not take place (still don't know why). Oh, an almost punch up at the crematorium after Rick's closest friend had been spreading mis information which got back to the people that he had lied about. Oh and one dented car when hubbies nephew backed into a fire escape in his haste to go and collect his daughter who had been rushed to hospital the night before. It wasn't a very good day and to be truthful I was glad on this one occasion to leave Scotland to come home.

Now I am sitting here tonight worried sick. Hubby hasn't been particularly good the past couple of weeks and when he had his last diabetic check a few weeks ago, the doc told him that he was going to have to go on to insulin injections today. Well he went and after telling the doc that his appetite has decreased considerably the past few weeks, he has actually put on weight, This is not a good sign apparently (as he is working away again, I wasn't as aware as I should be at how little he has been eating, and it had only really come to light over this bank holiday weekend....)

The doc has scheduled him to see a diabetic specialist and to have a scan of his pancreas (which hurts) and to have a camera down to see what.s going on inside him as soon as possible. So, as I said I am worried sick tonight.

Himself, who is equally as worried but putting on his 'of course I'll be fine' face, decided to drive back down to Kent to work tomorrow........

I love this man with all my heart, but I am so worried tonight. And he is on his own..

Woolwich Today

Himself was in the army. His Sister's son was in the army and is still out in harms way as a security officer. His brother was in the army. His other sister, her husband and two sons were in the army, one of them being very seriously wounded in Afghanistan and is lucky to be alive even though he is now partly paralysed and brain injured. My married family are all proud to have served their county - one of them on the 'wrong side' according to the rest of his Irish family from whom he has been divorced since he took the Queen's shilling.

My heart bleeds tonight for this poor young man who was slain on our streets. I don't know the why or the wherefore of what his attackers wanted to prove but I do know the heart ache of losing loved ones and the many hours we sat with my nephew in Intensive Care when he was flown back to the UK after we had twice been told he had died in the attack that ended his army life.

Who ever you love, give them an extra hug tonight. Life really is too short not to let them know you care xxxx

Perth Employment Agency Update

The woman that I have been emailing, phoning and calling for over a week regarding the job her agency are advertising, finally replied to my email on Friday and apologised for the lack of contact as she had been away all week. OK, can live with that.

She asked me when I would be available for a telephone call. I replied straight away and said I could be available at any time to suit her (I don't mind having a conversation at any time as long as we have one !) But  I asked could she drop me an email just to let me know roughly when it was likely to be, so that I could make sure I was by the phone (there is nothing like lack of prior warning when you are woken in the middle of the night and need to have a sensible conversation to sell you capabilities when you have just woken with an unexpected jump)

Its now Tuesday afternoon here (and 9.30 at night in Perth) and somehow I'm starting to think I am back to where I was nearly two weeks ago.

Am I asking too much for professional service, from a large professional employment agency, for a professional position? I'm starting to think its me...

Still Here

Well, I am still here. In the UK that is. Some things have changed a little in the past few weeks. Himself managed to get a job back with his old boss, but this means that he is now working in Kent again and living in a caravan. Its great to get him away from day time television but it means that by the time he gets paid at the end of the month we will have paid out about £1400 in caravan fees and petrol expenses. He can claim back some of the petrol expenses but wont get this until the end of May. He cannot claim back any of the caravan fees sadly. And he is grumpy with a capital G right now. Its looking increasingly as though he is going  to have to go onto insulin for his diabetes as we still cant get his blood sugar levels down to where they should be. And he hates being on his own.....

I have still been job hunting myself, both here and in Perth. I do have a job offer here which is good, but I don't start for another month and I will also be working away from home mostly, which is not so good :-( but beggars cant be choosers right now, so I have to just get on with it. Just means I will be up North, Son no 2 will be at home in the Midlands and Himself will be down South.....

I have two jobs that I have applied for in Perth, both of which I am suitably qualified for, have current knowledge etc but do you think I can get to speak to the consultant at the agency who's dealing with the vacancy? Can I heck as like ! I have applied on line, I have emailed as well, have called her office twice and her mobile once. She appears to never return calls or emails. I was starting to think that it is just me, but having spoken to other people who have applied for work in Oz, it seems that what I am experiencing is normal, consultants there appear to be so half soaked and unprofessional compared to the guys back here that I have been dealing with over the past few weeks who were so on the ball it was wonderful and I am full of praise for them.



The house is still full of packed boxes. I have only unpacked the ones which contained vital stuff like interview and work clothes and kitchen stuff, all the others I have left packed or have re packed. Not just because I am hoping above hope that a job in Perth comes off, but because a move from the Little Terraced House may happen any way - long story which I wont go into just yet. Its frustrating and a little depressing keep moving round boxes of 'stuff' so my task whilst I am at home for some of the next few weeks is going to be to de clutter even more than I already had - I know I still have way too much stuff lurking about.

Charlie had his first appointment at Perth Childrens Hospital. They are pleased with his progress since his last op in Birmingham and have roughly scheduled his next op for late this year, early next year. I am so desperate to be out there before then to help my son and daughter in law as much as we can when 'Bruce' (my nickname for Bump no 3) puts in an appearance and to be there for my two beautiful littlies who I am missing sooooooo much. Even though I am SO grateful for skpye, I come off it in tears most times.

So, onwards and upwards !

Elaine, sending you a big, but gentle hug. If there is anything, anything I can do to help, drop me an email xxx

Update

We have been back in the UK now for 5 weeks and it almost  feels like we have never been away. I am still trying as hard as I can to get back out to Perth - I still have my visa, but its a job that I need to support us. My Sister in Law wants us to go back out and work with them again, but to be truthful its probably going to be the last option as the stress caused by their constant fighting, arguing and shouting is almost unbearable. Plus the complete lack of any privacy whilst living in the 'shed'. So I'm trying my hardest to get another job but it is certainly proving difficult.

Back here at The Little Terraced House, we are surrounded by most or our belongings packed in storage boxes. Every thing should have been shipped out to Perth last week, but for now its on hold. So I am at the stage of unpacking essentials such as warm clothes (I don't think I have been warm since we arrived back here) and cooking items, baking trays etc. I want to get the pressure cooker back out, but I know its in box 13 which is under boxes 14, 15, 16 and 17 and behind boxes 24, 25, 26, 27 and three mirrors, and to be truthful its too much effort right now. I located the slow cooker so that will have to do.

Himself has not been at all well since we arrived back. He was diagnosed with type 2 diabetes about 12 months ago and we had it fairly well under control until recently. Now we can't seem to get his blood sugar count down to anything near sensible regardless of what we do or what he eats. His blood pressure is also sky high and he is having mood swings which have to be seen to be believed. He does know that he is having  them which is one good thing. (Imagine a room full of women with PMT) - well he is like all of them at the same time !!!!!! :-)

I have an interview for a job here tomorrow, so fingers crossed that it comes off as we need finances of some sort whilst we sort out what the heck we do next.

Charlie will be seeing his new medical consultant at the end of this month, so we may know if and when his next op will be. I though I would put some of the details of HLHS on here so you can see the challenges this little man of mine has faced.

Hypoplastic Left Heart Syndrome - which means the left side of the heart does not develop or is under developed 

STAGE 1 – Norwood

This surgery is preferably performed in the first week of life. A repair is made to allow the right ventricle to pump blood to both the lungs and the body. Because blood flow must be forceful for the immature lungs, the surgeon creates a tube from a branch of the aorta to the pulmonary artery known as the modified Blalock-Taussing shunt. The baby will still appear blue (cyanotic) after this surgery. Charlie had his done at 1 day old, we hadn't even been able to cuddle him at this stage. 6 hour surgery.

STAGE 2 – bi-directional Glenn or Hemi-Fontan
This surgery is preferrably performed at about 6 months of life when the blood starts to flow more easily and the ventricular force is not needed. The surgeon creates a direct connection between the superior vena cava and the pulmonary artery thus diverting half of the blood flow without the assistance of ventricular force. This reduces the work on the right ventricle by allowing it to only pump blood to the body and allowing all blood from the upper body to the lungs. Charlie had this done at about 8 months old and had to have a third open heart op as the aortic arch kept collapsing. It turned out that his vocal cord nerve was wrapped around it and in doing the repair Charlie lost his voice for nearly two months and the surgeons did not know if he would get it back. He did get his voice back eventually, but it is so distressing watching a baby silently crying in pain....

STAGE 3 – Fontan
This surgery is preferably performed between 18 – 48 months. The surgeon connects the inferior vena cava to the pulmonary artery. This will allow the remaining blood coming back from the body to go directly to the lungs. The final result will be no mixing of blood in the heart with more oxygen rich blood going to the body. This will significantly improve the child’s health and growth.This is the next op that Charlie will have - date as yet unknown.

Heart Transplant – May be required.
HLHS requires a life time of follow up care. Most HLHS patients will require heart medications for life. They are at a high risk of heart valve infection (endocarditis) and require antibiotics before dental work and most surgeries. At this time, life expectancy is relatively unknown. 70% of infants who survive heart transplant or the Fontan will survive to the age of 5. Whether he will eventually need a transplant we don't know as yet. All the surgeries carried out for HLHS are palliative care, there is no cure for HLHS, but the series of three ops are hoped to get HLHS children to teenager hood where by if they do need a transplant they would be of a physical size to accept an adults heart if a matching one was available. (it is very rare for a child's heart to be available for fairly obvious reasons)

Birmingham Children's Hospital where Charlie has had his previous 3 majors and 4 minor ops, are wonderful and we know that their survival rate is growing year on year with the ops that they carry out, which does give us hope for the future.

What is so wonderful (in some ways) is that if you saw my little monster, you wouldn't immediately know that he has a life threatening illness which could kill him in a second. He is growing quite well, although Lewis at a year younger is about to over take him in height and weight, and he zips about like most 3 year olds, but get breathless quickly and goes blue, so he has to have plenty of quiet times to give him breathing space - not easy when your 3 year old head says 'I want to go and do xxxx' !!  

This five weeks is the longest I have been apart from my little monsters and I am missing them so much that it hurts. Talking to them on skype is just not the same as a hot sweaty hug, and hearing Charlie saying, 'Nana you get in your car and come to my house now!' breaks my heart.

This photo was taken last year at Brighton and is one of my favourites. Lewis (Mr hollow legs) had just swiped Charlie's muffin out of his hand and you can see Charlie looking at him as if to say 'Oi give it me back!!'