Purplegerberas's Blog

A rambling collection of my thoughts about life, my children and crafty things

Keeping the positive momentum going

Back to reality and back to work on Wednesday and so far so good.

I’ve tried really hard to keep positive and not get caught up and dragged down in others doom and gloom. I’m lucky that my secretary is on the same positivity drive and we have adopted the new office mantra of ‘What would the Dalai Lama do?’ to refocus ourselves on positive, calming thoughts (success of this varies!)

 

So the good things from the week –

Samuel is going to sleep much quicker. No protests or screaming tonight. He played in his room for a bit then put himself into bed after 20 minutes. He’s also sleeping until 7am most mornings. The sleep is making us both feel more human and better natured.

Today we received the clinic letter from Samuel’s last hospital appointment. We had been concerned about his breathing and he hasn’t been himself since October. His consultant feels that the breathing problems are not related to his heart and he probably is just suffering from repeated colds and chest infections. The letter explained that a chest xray shows resolving infection that doesn’t need further treatment. Cardiac wise he remains stable with no real change in his overall condition since his last review a year ago. He still has mild stenosis and regurgitation and some hypertrophy but this is as they had previously reported. He has another appointment in two months time but this is mainly to review his breathing and we were told that he would probably not have an echo then.

Had a really good day out of the office yesterday to concentrate on fellowship things. Have kept up with my journalling. I came to the conclusion that I have a real interest in coaching. I’d like coaching for myself to aid my development and to keep my motivation up. I also think it is a good way to help me deal with my team and help them to develop. I usually take on everyone else’s problems or queries at work and by adopting a coaching mentality I can reduce some of that workload for myself, delegate and aid staff development in the process – win win!

I spent yesterday searching for a coach and trying to find someone suitable. I have received money as part of the fellowship so had intended using this to pay for coaching. Today I had a conference call with the programme leader who has suggested she will contact our regional health authority as they will have coaches that they use and ask someone to contact me to arrange this. I will not have to pay for this meaning I can put more money into my service and team development.

Yesterday I also met with someone I had approached to be my mentor and clinical supervisor. I had sent a cheeky email asking for her to suggest potential mentors to me in the hope that she would offer to do it herself. The plan worked 🙂 The meeting went well and I have really good feelings about it. We discussed many things and our opinions are the same on a number of key issues. She has given me things to work on and suggested further sources of help. I also discussed with her about a proposed restructure of our trust and that I feel this is a threat to our service. She explained it in a different way to how I had viewed it initially. With a different perspective I am now confident that we can use this proposal to our advantage and strengthen our role.

Operation Declutter continues at home. My shredder is still keeping pace. I’ve ordered the phone docking station and I’m longingly looking at the Ikea website for storage for my kitchen command centre. Today I introduced the 15 minute rule on my work desk (yes, I am just as bad at work). One drawer cleared. My filing cabinet will take a long long time to organise.

 

So a good week. I’m concentrating on my little goals and using small steps to work towards the bigger objectives. I need to keep focus on this as its working well. Any other suggestions on keeping a positive momentum will be gratefully received!

 

 

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Circumcisions and scooters

Busy and strange day. Lots happening.

First a trip to the hospital with Samuel to see the urologist. He keeps getting recurring infections and our GP thought he might need a circumcision.  The quickest trip to the hospital I can remember – in and out of the car park in 18 minutes.

The verdict was good. Although he has a bit of a problem, it seems to be resolving itself and he felt it didn’t need surgery. If he gets another infection Samuel has to have steroid cream to help improve things but otherwise we can leave well alone.

Did my bit to spread the good karma by passing my car park ticket on.

Steven then received a letter from the police. His scooter was recovered from a disused hospital on Sunday night. Its a write off. He’s angry that the police recovered it and charged us for the pleasure. The last time his bike was stolen we had requested that we recover it. They ignored this and charged us a huge amount of money.  We formally complained and it didn’t really get us anywhere. Since last week, every single time Steven has spoken to the police he has requested that we recover it to avoid the costs. He was reassured that that would happen so he went a little mad this afternoon at the letter. £150 recovery charge then £10 per day storage fee. We estimate the bike is probably worth about £50 as it is in such a bad state.

He’s spoken to his insurance company and they have agreed to pay out for the bike and will also cover the charges from the police. I have now convinced him to let it go and move on.  I have a feeling the weekend will be spent scooter shopping. The new garage door will be fitted in two weeks time so everything seems to be moving in the right direction.

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A good hospital letter!

We had to take Samuel to the hospital last month. It was his first appointment for six months and leading up to it I’d convinced myself he was deteriorating. His hands and feet had been a poor colour and he seemed to be struggling in the very cold weather.

The appointment went well. His cardiologist agreed that he appeared worse but reassured us that it wasn’t heart related and was most probably due to the continual cold he’s had all winter. There was a student present and the explanation was given that when Samuel was diagnosed he was in severe heart failure – this was giving greater concern than his aortic stenosis. It took six months but his cardiac function eventually returned to normal and at this latest appointment it was confirmed that it remains normal.

We received the copy of the GP letter today. I’m learning that sometimes you find out things not mentioned face to face but this one was very positive. The final paragraph has made me smile lots this evening –

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Too tired to think

I’m going to try hard to be positive and not descend into moaning! Another week I’m pleased is over – been very busy and feel like I could sleep for several days if given the chance. Samuel is still waking stupidly early and Steven has been very unhelpful in letting me have a lie in one morning. Work is still manic and showing no sign of letting up so I’ve got the feeling of being on a treadmill at the moment.

I went to a meeting about the Safe and Sustainable programme on Tuesday night. The department of health is currently reviewing all children’s cardiac surgery and under the current proposals it looks like Oxford could lose surgery. This would means we could have to travel to Southampton or London for Samuel’s treatment in the future. I went to the meeting open-minded and supportive of the theory behind the suggestions made. Sadly I was left doubting the whole thing and very skeptical about the idea. It seems the suggestions made have no foundation and at no time did the panel back up their arguments. I’m worried the decisions have already been made and the meetings are just an exercise in ticking the right boxes so it looks like correct process has been followed. We will be very very sad if Oxford closes and it is already clear that the people working there are looking for jobs elsewhere. I’m feeling the need to put this energy into a good moaning letter to my MP!

But let’s be positive!

I’ve just bought lots of wool on eBay to make myself a couple of things (please, no-one tell Steven as he may ask how much money I’ve spent)

I’ve got a few days off work next month to escape to Mum and Dad’s caravan with Eloise and Samuel. Steven can’t get the time off work so I’m biting the bullet and going on my own. I’m a little scared of the thought of no adult conversation for nearly three days (hence the large quantity of wool to help me knit my way back to sanity)

I’m really enjoying my book at the moment – The Kite Runner. Despite my tiredness and falling asleep mid-chapter I’ve got a big pile of books to work through.

I’m losing my train of thought….need coffee.

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A good good day :-)

Samuel had an appointment at the hospital today and they doctors were thrilled with him. His stenosis appears to have improved. They said this generally doesn’t happen so they’re confused by it but nonetheless happy. His cardiac function has also improved so it was gold stars all round. I was very pleased when they said they don’t want to see him again for 6 months. This added to my feeling that Samuel’s heart problem is becoming less of a feature in our lives and that we are now able to forget about it in general and get on with things. There was a time when I thought I would not be able to be this casual about it but he does seem really well at the moment so I’m grabbing the positivity and going with it.

I’m plugging away at my 101 list – getting there gradually. I’m trying to tell myself 1001 days is a long period of time so it’s not going to kill me if it takes me a couple of weeks to think of everything. I’m also thinking and planning for the things already on the list so it’s all progress.

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Hospital Visit

Last Tuesday Samuel had a cardiac review in Northampton. It was the first time we’d been back there since he’d been transferred to Oxford on that awful day. It was amusing standing in the car park thinking last time we were here it was very late at night, snowing and Steven was having a huge shouting session being very angry with the world!

Cardiac wise all is good. His growth rates all remain above average. I explained that we’re still having feeding problems that I am convinced is reflux. His consultant said whilst he continues to gain weight well they are reluctant to add any medication to help. He admitted that even though its frustrating for us, we just have to persist with it. The reflux comes and goes but in general he screams through two feeds a day. We’ve tried colic remedies and these made no difference. A suggestion to help was to start weaning Samuel now. I was slightly freaked out about this but he’s 15 weeks old so I suppose it’s not too bad. I’ve tried a couple of times so far and it hasn’t been a raging success.

Eloise also had an echo whilst we were there. When Samuel was diagnosed they were very interested in our family history as this tends to run in families. We are not aware of anyone else having this. To be on the safe side we asked that Eloise have a scan to check her heart. Luckily, all is good and her heart is normal. She was also a star having the scan done – she relaxed after a little bt of persuasion and the promise of some chocolate buttons.

So we’re back to the hospital in two months for the next scan. I feel we escaped this time quite unscathed. Just the battle with baby rice to contend with now!

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End of the week

So my attempts at blogging more regularly haven’t started well but hey ho.

I’ve had a good week – the sun has been shining most of the time which always helps. Spring isn’t too far away and the bulbs are starting to come up in the garden so there is optimism in the air.

Eloise has been ill with a chest infection but she’s soldiering on, enjoying a bit of ill health and medicine (she is a big hypochondriac!) I’ve been paranoid about Samuel catching it so have been watching him closely. I admit to counting his resps several times day and even putting my ear to his chest to see if I can hear any wheezing! His feet have been bluer than usual but he seems okay and is feeding well so I’ll put my paranoia on the back burner for now. We have the hospital on Tuesday so at least he’ll be seen then. The pre-appointment tension is building already though. If we get through this unscathed we’ll be good.

It was very sad to see John Radcliffe Hospital on the news, suspending paediatric cardiac surgery. The media seem to be intent on a witch hunt looking to point blame. One article in the Daily Mail really got to me for being very inaccurate so I emailed them to let them know what I thought. I know it won’t get me anywhere but writing it helped! They implied that operating on a 4 week old baby is ‘common’ and quite normal. I told them my experience of the hospital made me very very aware of the seriousness of the situation and it is a very sad fact that children with cardiac problems are at a high risk of death. I know I am bloody lucky to have my son alive. Without that hospital that wouldn’t have been possible. The papers are scaremongering with inaccurate facts. I hope the situation is resolved soon.

Busy day ahead tomorrow with an appointment at the bank to sort Samuel’s savings account then the cat to the vet – I think he has an umbilical hernia. I like to try and diagnose the cat regularly. I’m not too bad at it. Maybe I’m wasted on human health. Hospital Tuesday then off to Wales on Wednesday for a few days break – can’t wait!

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