Thursday, November 14, 2013

An update. Not the greatest.

A lot can happen in 3 years. 2 more babies. A dog. And Rejection. Peter started feeling ill in October. We thought it was a cold as the smallest children had been unwell. But it didn't shift. So he went to the GP who signed him off work, gave anti biotics and ordered rest. Third week of feeling unwell, and no improvement. So back to the GP who signed him off again and gave different antibiotics. But Peter also decided to get his tracrolimus levels checked, as he felt things were off kilter. They came back very high (usual range is 7-8, his levels were coming back as 15). As tracrolimus can affect kidney function we were concerned, and decided to get levels rechecked after the weekend. I became very worried after the weekend as I could hear his breathing wasn't right. He was struggling a bit. So called Harefield, and got him into clinic towards the end of week 3. A huge round of tests, and the general feeling was it was just a virus, but to be safe, they wanted to do an angiogram and biopsy. And also start new meds to lower his blood pressure, which has been high for a while. So he was admitted overnight onto the transplant ward. Angio went well with no issues found, so a biopsy was done. Peter was found to have grade 1 rejection. Which doesn't usually cause symptoms, but as he was unwell, they treated him with high dose of IV steroids. His O2 levels were also low, but no idea why. After a week in hospital he is now home and resting. This episode has reminded me of how precious time is. We know that life after transplant is never certain. There are complications that can arise at any time. We are now working towards getting Peter fitter, and hopefully back to work soon. ATM the side effects from all his new meds are making him feel awful, he is shaking all the time, and very tired. Life will return to some sense of normality soon.

Saturday, March 27, 2010

Peter is doing well

Some may know, he had a minor illness the other week. Minor for everyone else, big-un for him. He was off work for almost 2 weeks with it, lost a shed load of weight,. and got me v v v v worried.

He appears to be on the mend now, and is back at work.

Everyone else is doing well. I haven'ty accidently killed anyone by giving them allaergic reactions or anything.

Roll on Summer!

Thursday, November 19, 2009

Breathe Easy Girls

Its been an eventful last few weeks here.

The morning after bonfire night, Sophie woke up with severe breathing problems. I had her in my bed with me, as she had been coughing and snotty. Around 5am, I noticed her breathing was a little 'off' and her temperature was getting higher. I took her downstairs to get some calpol and her little chest was working so hard. She was having retractions around her neck and chest. So got peter to dial 999 whilsty i threw together some clothes and a bag.
Soph was very pale and lethargic and clammy, which is definatly NOT like soph, who is well, quite vocal.
Her SATs were 91, and i cant remember her resps/reps.
We were blue-lighted to a+e, and gave her a neb in the ambulance.By the time we arrived at the hospital her breathing was better, but she was actually wheezing quite noisly. By 10am, her breathing was a lot better and even normal. So we went home with an inhaler and spacer.

By 3pm, I noticed she was going downhill again, but the inhalers were working.

By 6pm, i wanted her back in hospital so called my dad to take us in. BIG MISTAKE. what shuld have been a 10minute journey turned into almost an hour due to traffic. I gave soph more salbutamol in the car, and we finally got into a+e after 7pm (after standing behind some parents who were discussing how to get their child seen quicker by saying they thought he had swine flu, though they didnt really think that [hmm])

A+E decided that they wanted to monitor a bit more, so put us in the waiting room for 40mins. By which point Soph was starting to struggle again.

After dosing her with Atrovent and Salbutamol and gettinmg her breathing under control for the second time that day, we were finally allowed out after midnight.

After a 10days on both inhalers Soph is feeling much better.

So thats 4 out of 4 girls asthma/asthma like symptoms.

Sunday, October 25, 2009

New video 'Life After Transplant'

I have been meaning to do this for ages. Finally got round to it last night whilst trying to adjust to the clocks changing.

Enjoy! Feel free to link it, and post it wherever you feel it should be.



View this montage created at One True Media
LIfe After Transplant

Saturday, August 15, 2009

Yesterday, Today and all the tomorrows...

Yesterday was day of giving thanks, and remembering Peters donor and their family, who changed our lives forever. Their gift has been amazing and everyday, i look at my family and think how different things could be. Peter might not be here, Sophie wouldnt be here. It would be me and our three oldest daughters just muddling through and asking ourselves why the call never came.

But it came. And it was wonderful. Our lives were turned upside down, and in a good way for once. The happiness of everyone and the releif was tremendous. People were, still are, so so happy for us. I likened it at the time, as very similar to haviong a new baby, as everyone was congratulating us, and asking for news.

Somebody on Mumsnet.com wrote a wonderful little poem, about Peters Pink ears, as I was amazed at how the colour started to glow under his skin, right to the tips of his ears.

I know I’ve never met you,
And maybe never will
But I have read your story
And really got a thrill

To know your wait was over
A heart, for you, was found
And like Mumsnetters everywhere
I cheered and jumped around!!!

I check your progress everyday
Share Sarah’s joy and tears
But the news that really made me smile
Was that you had pink ears!!!

Today, we had a normal day. I took the girls to the library, we had dinner as a family, with Peters parents here, and Soph throwing her carrots on the floor. We had cake. Peter watched the football (his team lost, not a happy man).

Tonmorrow, we will take it as another day. If the sunshiones, then we will head out, maybe to the lakes. If it rains, then maybe we'll go to my sisters. But we will have fun regardless.

And now for some lovely photos. Rather a lot of them in fact.










Monday, August 10, 2009

wow!

This has been an eventful month so far, and its only just begun.

After many years of Peter being ill, and me being his main carer, we have decided that now its coming up 2years post transplant, and Peter is almost back to perfect physcial health, we should be looking for work. So last week, i saw some jobs advertised on the Ocado website. Peter attended an open day on monday last week. He was completly honest with them regarding his past health problems and heart transplant. They have asked for a docs note to decv;are him fit to work, and if thats ok, the Peter has a job!!

Me however, i dont. I didnt even get an interview boo-hiss!!!

And on a down note, Baby Sophie's allergy test results are back. She is allergic to Milk, eggs and peanuts. boo!!!

Everyone is fine, Serena starts school soon along with the older two, and i can focus on Soph and finding childcare that works with Soph's allergies, for when i do finally get a job.

Saturday, June 27, 2009

Life

is normal.
Well normal for a busy family of six [eeek].

THis year we have been to Wales, and Skegness. Wales was wet, damp and grey lol. It took us ages t get there, and even longer to get back. Its not a journey I will be taking again whilst the kids are young (8hours in a car, with one crying to be fed every 30mins, one tantrumming cos its taking ages to get home, and one throwing up every 30miles was not fun, the other one was in grandmas car being good lol).

Skegness was good. But reminded us about a good suncream technique is needed. On the tuesday, we decided to go to the beach in the morning, and to be back in the shade at 12-ish. We put suncream on everyone. Peter slatered himself in the stuff. We went though over 2/3rds of a bottle on just one mornings application. Except Peter missed a patch on each leg above his ankle. So he had two burns on his legs. Very sore, very painful, and even now, 3 weeks on, they are a different colour to the rest of his legs.

Soph is growing. Slowly, but getting there. She has an allergy to cows milk, which we found out about 2 months ago, when I gave her ready brek and milk. We ended up in A+E, wieghing her to figure out an anti histine dosage for her. I thought soemthing wasnt quite right, as she is def more unsetttled than the other girls were, and is slow to gain weight (but has started to gain now i've cut cows milk out of my diet, and other dairy products). We are seeing a specialist this week to see about allergy testing, as i suspect she may have an egg allergy as well.