Hi everyone, nothing gives me more pleasure than to welcome the New Year.
2012 was quite a year- the hardest but one of the best of my life- I have achieved so much I thought was no longer possible and am so grateful I can’t begin to tell you.
As ever, my thoughts are very much with my donor’s family as they begin another year without their loved one and also to the families who have not been as fortunate as ours. Prayers are continuous for my friends desperately waiting for transplants to save their lives or just struggling with illness- we have all experienced the power of prayer, support and positive thinking so please join me in this.
I’m afraid I got slightly side-tracked by Christmas and my latest hospital admission so here, slightly late is the last part of my hospital diary:
Thursday 1st December – day 8
Kerry looks much brighter today, more herself and fluid in some of her reactions and movements less clumsy. The policy of dialysis over night continues – still insufficient kidney function – but Dr Carby said that was inevitable considering how ill she was. He visited at lunchtime, listened to her chest and pronounced he was pleased with her progress – sitting up is an important next step to help with the lung function and he was pleased (as were they) with the physio progress. Kerry told him how hard it was to sit up. He reckons if she carries on without hiccups then they might be able to start reducing the ventilation support volumes after the weekend and even have her off the ventilator by the end of next week. She has to stay in ITU until breathing properly and safely on her own. The first step is to reduce and breathe using cpap.
Kerry asked about having a drink – not until they have weaned her off the ventilator and then can change the trachy cuff which will make it safe to swallow. At the moment too risky. She will also then be able to talk.
The nurse removed the ng tube – so for the first time in ages Kerry has a free nose and face – but only until the Dr (coming from a different hospital) can come and put in the jejunum tube.
Kerry’s feet and lower legs remain numb yet painful – I gave them a rub and bent them up and back – she can actually push quite well against me. Using her alphabet chart she told me there is so much she wants to say – and lots of questions to ask. She asked for a photo to be taken – which I did – without her ng tube. She is obviously hungry and missing food – ice-cream, capri suns, appletize…
But all in all good progress maintained and happy doctors.
Saturday 3rd December – day 10
Phil’s text says she had a good day and has been on cpap for half an hour – and the plan is to do this every 2 hours increasing the time. Kerry doesn’t like it – it feels as if she isn’t breathing properly. The Drs are adamant that she has to get used to it .
She is doing well. No dialysis today or overnight.
She managed 2 hours off ventilator later in the day but needed persuading!
Sat up in the chair today, ‘chatted’ to dad for 40 minutes – he is so pleased with her progress.
Sunday 4th December – day 11
4 hours off the ventilator today on cpap, making progress each day. Troublesome stomach. Mention of possibly being able to speak tomorrow – so I decided to go back for that – I wouldn’t want to miss it.
Monday 5th December day 12
Arrived to see her at 4.15 – met Phil coming out as she was asleep. Done cpap again but she still doesn’t like it. Sat quietly with her till she woke but then encouraged her to go back to sleep as I could see how tired she is. I can see the improvement but no doubt I saw her at not the best part of the day. The registrar said to Consultant she was doing fantastically well and he repeated this quietly to me as he was leaving. When the consultant realized she was ‘the one…’ he said yes fantastic! They also said she was being ‘aggressively weaned’ – interesting expression.
She seemed a little flat after all the progress she is making – but I think she is just so tired and hopefully feels able to just rest when I am there.
Also it was only today I realized that when she is on 30% oxygen that includes the 20/21% in normal air – so is only very little extra.
Tuesday 6th December – day 13
Today has been a tough day for Kerry – despite doing so well – even getting into a standing position with help from aid with the physios – she is feeling she is not doing well, even that they are not pleased with her. It is all such hard work. Lovely nurse Katie and myself tried to reassure her that they are only pushing her to get that last bit of progress out of her and she really is doing ‘fantastically’.
Not particularly well-timed but we realized the chap in next door bed had had lung transplant on Friday (4 days ago) and was sitting up in a chair, no ventilator, no trachy, eating and drinking, talking (non-stop he was so pleased to be able to talk and breathe).
I told Kerry she couldn’t begin to compare with him – if she’d had her transplant 18 months ago she’d have been like that – but she had been to the wall and back. She had to almost start again learning how to move, walk and all her systems. I told her when she was waking up she was doing some of the reflexes like a baby – and she there was no short cuts to her body regaining strength and relearning what to do.
She had more time on cpap which she conceded might be getting a little easier.
Also new treatments today for stomach issues- she is so uncomfortable.
She also feels quite sick – which is also due to rise in U&Es, therefore she is to have dialysis again overnight.
When I returned after afternoon break she was about to have her cvp re-sited in the neck and an arterial line inserted in the wrist. I found out later that when they tried connect the filter the venous access wasn’t satisfactory therefore they decided to re-site and so be able to remove all the groin lines and give it chance to heal. Allowed to stay whilst they got everything ready and then they gave her a bolus of morphine which settled her nicely. I returned when all done and she was asleep. CXR confirmed all in right positions. Dialysis started fairly soon to help relieve her nausea. As soon as it starts Kerry feels very cold – this is quite usual as despite a tube heater being attached around the pipe that returns the blood to the patient it still chills them. They were about to attach her heating blanket as I left.
All told a good day but very hard for Kerry – she keeps saying she didn’t know it would be this hard – but then I say we didn’t know she was going to be that ill. Drs are keen that she starts to sleep less in the day to re-establish the day/night pattern before being transferred to the ward.
Wednesday 7th December – day 14
When I arrived Kerry was sitting quite upright in bed and she had her speaking valve in. She was having a cup of tea (the first words I heard her say followed by her tummy’s bad). She was breathing all on her own – just some oxygen being piped into her trachy site. She was very tired and fairly shortly went back on to cpap and then not long after to the comfort of the ventilator. It was so lovely to hear her talk – and although deep and a bit gruff it did sound like Kerry. Phil went out to get some capri suns and pineapple juices but it was a cup of tea that she had been craving.
Nurse Sam today – very kind and aware of how her tummy is hampering her progress. Physios came earlier but concentrated on the weaning and afterwards she was too uncomfortable to sit out or do more physio. Drs came round and reviewed her care – still very pleased with progress but see the GI problems as a set back. They have done an abdo x ray and reducing the feed rate hoping that her gut will settle (when they were moving her, her breathing went awry due to the pain). Transplant Drs reviewed her later – for a unit of blood as Hb a bit low and hasn’t had any blood since immediately post-op. They had looked up the histology of the old lungs – it is consistent with her diagnosis of Ehlers-Danlos Syndrome.
Thursday 8th December – day 15
The most wonderful start to the day – a text from ‘Kerry UK’ saying ‘morning x x x ‘
How amazing – I have so missed my good morning and ‘night night’ texts from her.
The rest of the day followed the usual pattern – lots of care. Wonderful Scottish nurse who washed Kerry’s hair so when I returned in the afternoon she really did look sparkling clean. Phil said she tipped the bed up and did it all so carefully even blow-drying it. She then did all the dressings when I was there – these were painful for Kerry as the dressings were all well and truly stuck – but needed doing.
Tummy remains a problem. Abdo x rays show gas trapped in the large intestine. Very painful and hampering progress with weaning and physio. She started a new more concentrated feed in the afternoon and a new drug commonly used for babies. By the evening she was a little more comfy and did manage to sleep. Feet still very swollen, numb but also painful. Skin very dry.
Friday 9th December – day 16
Arrived to hear Kerry talking and drinking a pineapple juice. She has also had a yoghurt. Today the plan is to rest the nj feeding and allow a soft diet lunch and supper time (veg and pasta bake, mince tonight). Kerry really fancies mandarin oranges = Phil instructed to get some in! Dr Reed says there is some consolidation in the base of the left lung and she really needs to get sitting up to help use the lungs to a fuller extent. It’s not a worry but physio needs pushing (Kerry said she’d had a talking to!).
Kerry does feel she is making progress, each day she can see that some things are getting easier – her arm movements and lifting up her head – and she certainly looked good today sitting quite upright in the chair. I took some photos.
This morning we talked about what she can and cannot remember. The first thing she recalls is Kim telling her she has her new lungs – just that and nothing more and then me saying the same thing. I told her how we had kept on telling her not knowing what she could hear but felt that was the most important thing for her to understand. She said it took her ages to understand where she was – even only a few days ago she would still wake up and wonder where she was. For some time when she was in bed 8 she thought the nurses station was a café! I told her a bit about the time with the ecmo when they were trying to waken her up – and how horrid that was to see her so distressed but not yet had her transplant. Dr Reed says she was so pumped full of drugs especially ones like ketamine that it is not at all surprising that she can’t remember – but the gaps might well be come back over time – also that she had hallucinations.
Kidneys continue to recover.
Tummy still very painful and bloated.
Saturday 10th/Sunday 11th December – days 17 and 18
Phil with Kerry – she continues to make progress but hampered by tummy. Hoping she will be completely off the ventilator and ready for E ward by Monday.
Monday 12th December – day 19
Tom flew over first flight and stayed overnight and back first flight Tuesday. Kerry moved to Room 12 E Ward in the afternoon. Still very uncomfortable in her tummy. Needs nivea, v shaped pillow, refreshers, cheesy puffs and carnation milk (to go with the mandarin oranges).
Tuesday 13th December – day 20
Lovely to see Kerry – she is looking better but a bit overwhelmed at all the challenges – feet and legs still numb, heavy and uncomfortable, stomach still bloated and painful so much so she cannot sit up properly. Physio compromised to a degree although she did manage to stand up this morning. She says her lungs feel tight and heavy – and all the trouble with her tummy is making her behind with the physio and so she isn’t feeling the full advantage of her new lungs.
CXR shows quite a lot of secretions particularly in right lung so for bronchoscopy and lavage, possibly biopsy this afternoon. NBM since 9am as having GA. She went down at lunchtime only to be sent back as needed 6 hours since last ate. Dr explained this is not unusual and was encouraging and Kerry’s mood definitely improved when he said it would be under GA. They have also prescribed her a sleeping potion – she hasn’t slept for 3 nights and is very tired.
She has a speaking valve in all the time which sort of whistles on exhalation. On 3litres of oxygen. Bronchoscopy went well and she then had good supper afterwards but needed a nebulizer mid way as very tight. Will need to await c&s of washings to check if there is any infection.
Wednesday 14th December – day 21
A day of real progress but also hard work – again!
Dr Carby wanted to speak to Kerry and me together – for a serious talking to re the physio. Although not unsympathetic re her tummy he was very definite about her pushing herself more. They have all done the hard work getting her to this point and they will continue to do the bronchoscopys, tweak the medicines etc but now it is for her to do her part of the hard work. He was kind but really very to the point. They should get the biopsy and culture results this afternoon. He also said when they get all the results from the old lungs (could be several weeks) we can get copies – he will discuss them with us at the right time. Kerry asked about the donor. When ready Kerry can write an anonymous letter to the family – thanking them for her new life etc and sometimes they will write back (anonymously). It is very rare that there is further direct contact. Research shows that the initial anonymous letter is very helpful in helping the grieving family but very rarely does it go any further.
Now – cvp out, catheter out, arterial line out, monitors off, reduce oxygen to 2l then 1l then stop completely asap and nj tube out- but now of course she has to swallow all those pills.
One iv line required for anti-rejection drugs and hydrocortisone.
Current trachy to be replaced by a mini trachy.
In the evening the male nurse told us they had phoned to say she has a respiratory virus that is commonly found in babies/children similar to a cold.
She certainly was coughing quite a bit this evening but possibly due to loosened secretions following the change of trachy.
Thursday 15th December – day 21
A frustrating day in some ways – especially for me – developed dry throat overnight therefore didn’t visit Kerry at all. Jo Le F on her way home to Jersey for Christmas and asked to be allowed to visit so I picked her up from Denham station and so at least Kerry did have a visitor – and such a lovely one. Jo was so pleased to see Kerry looking well – and sitting up in her chair. Tummy is still painful but Kerry reports it is getting a little easier. They have told her about the respiratory virus found in the washings from bronchoscopy and so they need to keep gowning and gloving and keeping close eye on her temperature.
Friday 16th December – day 22
Poor poor Kerry – feeling unwell, has temperature and waiting to see drs. Nurse says I am not allowed to visit and Kerry is really miserable. Just when she needs some tlc I am out of action. Also I don’t even know if I am a risk to her, but we can’t take any chances. AHHHHHH!
Will take over nightshirts etc from Jane’s and drop off. Requested orange juice for taking all her tablets with – I wonder how all that is going.
Saturday and Sunday 17th and 18th – days 23 and 24
Kim and Ed over with Kerry. She has started having very strong nebulisers that take 2 hours to complete, 3x daily and are very toxic so visitors have to leave and any nurses cannot go in. Apart from that they had a good day. They put up more decorations.
Sunday not such a good day, generally more tired as still not sleeping. 3 nights of having an unresponsive male nurse.
Monday 19th December – day 25
Arrived to see Kerry at 2pm. Very uncomfortable and miserable – tearful and just had enough of everything being so hard. Just had chest drain rhs inserted whilst awake as fluid accumulated in lung. Physios wanting to see her but sent away – too uncomfortable post drain. Went through all that’s happened and gradually (with the help of codeine) she began to feel a bit more comfortable and cheered up. Legs very thin but feet totally normal. Dry skin but now using E45 lotion.
Tuesday 20th December – day 26
Kerry brighter today. Drain site a little less sore on right, left side drain fell out. As I arrived Drew was coming to see K and announced that the CXR showed no air or fluid in left lung so no replacement drain required. Very good news – lungs looking good. He also said that the trachy can come out – duly removed, mucky and quite large hole but that will all settle.
Kerry managed physio well – they think she will soon be taking small steps – requested Jane to bring up her trainers.
Tummy definitely better today – not perfect and actually still really quite uncomfortable by end of the day – however she managed snacks of cucumber, pringles and dip.
Bought some glasses today as Kerry not to have straws – they think they don’t help her bloating. Also got normal ribena – capri suns no longer the favourite!
Dressings all off today, wounds dry and healed.
All in all a good day.
Transplant co-ordinator Anne came to visit Kerry today and was obviously delighted at Kerry’s progress – she gave Kerry a boost.
Kerry has talked to Grace and she said that she had a cardiac arrest as well as a respiratory arrest on the Tuesday night. Apparently she had been worried that when she ‘thumped’ her on the chest and did the compressions that she might have broken a rib or two. That definitely sounds like a cardiac arrest!
Wednesday 21st December – day 27 – 3 weeks since op.
Arrived to see Kerry all washed and wearing new nightie – BHS special size 16-18! She looked good. Feeling good today and Dr Reed been in to see her and is pleased with her. Again she said the fluid from lung is all part of albumin imbalance and quite normal. The fluid seems to be coming to an end – all in all 750mls the first day and probably another 250 at least on top of that.
Left Kerry for physio and they were going to try her using a commode – exciting progress!
Great progress with physio – Kerry walked to sink then pushed back. Sitting out in chair and managed to use commode. All very tiring and her reward was bad cramp in left leg. Knee support helping though.
They are hoping to remove last iv line today – lots of tablets to swallow. Kerry saying a sad goodbye to her favourite iv paracetamol. The immunosuppression drugs are now at a sufficient blood level to stop the iv infusion.
The horrid 2 hour nebs have to continue until she has 2 consecutive negative nasal swabs.
Meanwhile her chest sounds clear. RHS drain fell out during physio – CXR to assess if safe to leave with no drain.
All in all a good day again but very tiring. Sitting out in the chair is still very hard work for her chest muscles – lying in bed is the only position she feels she is relaxed in and then still not comfortable because of legs, ex-drain sites and tummy. Today she looked at her scars – not very noticeable at all.
She is looking forward to Christmas and seeing Phil thanks to the kindness of the donor and family. We are ever mindful of them especially at this time of year.
Thursday 22nd December day 28
Slightly better nights sleep but legs very sore (left worse). Geof visited and thinks she looks Amazing! Drs are happy with her – the CXR show a little fluid in lungs but they are not worried. CVP in neck still in situ. Overall a fairly good day.
Friday 23rd December – day 29
Slept a bit more but woken at 5.30 to start the neb. Tummy more upset again.
She is doing well standing and using the commode but not walked much today as very shakey. Not feeling so good today – been allowed some iv paracetamol again as iv line still in. talking about new cvp line in neck but in the end they put one in arm – rather precarious position.
Bit fed up as lab wont report swabs till after Christmas so that means staying on these horrid nebs. Also a bit dehydrated so possibly for iv fluids.
They tried taking out the stitches in neck from the ecmo – but now too embedded in her skin so they will be getting a surgeon in to look at them.
Pleased to see Geof but by end of the day rather fed up with the whole virus and neb situation. It is all such hard work for her – but hopefully seeing Phil tomorrow will perk her up. Ward short staffed so that made day more difficult.
Saturday 24th December – day 30
Short staffed and ‘lazy nurse’ – Kerry very fed up but she did manage to sleep better as a bit more comfy – so that is good. Woken up at 6am but still not had neb or wash by 9 am.
Test for rsv negative today – if neg on Monday she can stop nasty neb. Positive for common cold. Something fairly common growing in groin wound but Drs not worried.
New cannula again today.
Kerry brighter and happier by evening – all washed, hair as well and sitting in chair in new nightie eating Percy pigs!
She watched Santa Claus the movie and had a visit by some carol singers.
Sunday 25th December – day 31
Better night sleep again and managed to stand up by herself today. Neb done in good time for Phil coming in at 10.30. No physio today.
Lunch with Phil in room.
P/c with Kerry at 6pm – for half an hour and she hardly drew breath – wonderful to hear her talk so fluently. Longest telephone conversation had with her for months.
Last iv prarcetamol this evening – all other iv s stopped so cannula out tomorrow.
Monday 26th December – day 32
Woken to have next nose swab – horrid as they have to go down very deep – he (Warren) tried 3 times but unsuccessful – usually done by the physios. Not best start to the day! Drs discussing next step. (Apparently there is another patient they didn’t manage to get a sample from).
Otherwise good day – more comfy in chair so sat up longer and walked around room. Back sore- maybe lay awkwardly. Had first glass of coke today.
They are going to start her self medicating this week – another step on the road to home. But…it is 3 months before she can start driving.
Sats 99% this evening and not a sniff of oxygen.
Tuesday 27th December – day 33
Finally she feels as if she slept quite well.
Asked to guess Kerry’s weight – my guess 39kgs – actual weight 38.8kgs. Pleased with that. Organised Jim to visit and do her washing, Jane will go Friday.
Tummy bad again today.
Nose swab done – will probably have to have one more as very cautious with the transplant patients.
Got another cannula in arm as she needs iv magnesium – but good thing is she doesn’t think she needs to take advantage of it for a paracetamol fix!
Text from Lucinda today – very kind.
All dressings are off, had some stitches out. Just drain sites left.
Trachy clean and healing.
Wednesday 28th December – day 34
Good news re baby Hamilton.
3rd nose swab done today…lets hope negative and nasty neb can stop.
S/B Dr Reed – told off for taking tablets too slowly!
Otherwise all going well. Little crackle on right side. Weight 39.1
Horrid neb has been stopped – hooray!
Walked down corridor to toilets and half way back – great progress. Not far off going home…Exercise bike to be delivered to room this afternoon!
Thursday 29th December – day 35
Slept really well and allowed a lie-in till 9am!
Starting blue book this am doing her own tablets.
Moving this afternoon to corridor – room 6 nearer the toilets and just opposite the nurses station. Now has to walk to the toilets.
Lots of stuff to move – good old Jim there to help. He reports physios very pleased with her. All good progress.
By 3.30 done 2 long walks and used exercise bike and step, all very hard work – so absolutely exhausted. Leanne coming to visit tonight.
Friday 30th December – day 36
Hey – first shower today!
S/b Dr all good. For CXR today to check but last one looked good.
Not able to do spirometry yet as trachy hole still too big.
By 11am moved upstairs to F ward room 4– she was the most well patient to move – so although pain to move again all positive signs.
Jane visited and reports she has moved. Tired but managing lots of talking!
Saturday 31st December – day 37
Hair wash today and all going ok. Had McDonalds take away for New Years Eve treat with Phil – and no heartburn!
Sunday 1st January – day 38
Started day with bacon roll with no problems after lie in ‘till 9.30, enjoying the relief from the heartburn, but still some problems with bloating etc – can take up to 3 months to really settle.
S/B Drs – can start to think about home…need to be more mobile but physios pleased with progress – moved around room without the frame today but need to master stairs next. Trachy hole needs to close more so can learn to do spirometry for lung function tests.
Kerry keen to get home – pleased herself with progress. Slept all evening – hope it won’t affect tonight…
Monday 2nd January – day 39
Not great nights sleep – only 2 hours and unhappy bunny.
Migraine today – vomited up some of 24 tablets but hopefully anti-rejections ones are ok as half hour ago. Not allowed nurofen. Tummy bad again. Not good day – upset with Phil affecting mood.
S/B Drs – will do blood tests to check if anything treatable up with tummy.
Supper was foul – sausage casserole hospital style with total of 35 tablets today.
Visited by Jane and Jim who say she is in good form – even if a little moany!
Tuesday 3rd January – day 40
Some sleep and tummy a bit better but still not great. Still have headache and nausea.
Trachy hole not healed anywhere near enough for lung function test by 10.05…but by 15.55 – just done first lung function test with new lungs! Fvc 49% and fev 55% (old lungs were 12%) Great starting point and not accurate as trachy still leaks some air and also her body still adjusting to new lungs. She is really happy.
Walked with stick rather than frame today and done bike – exhausted! Worn shoes for the first time, physios very pleased so the Dr says.
Drs have cut out some pills and nebs. Had last of the stitches out today. Visited by Sue who was very impressed with the neatness of the scars and how well healed they are already.
Good day overall but very tired by the evening and developing a snotty nose. Drs not worried but not nice for poor Kerry. Still struggling with headaches and nausea.
Wednesday 4th January – day 41
Visited by Mr Simon to see how she is getting on. He is very pleased with her but more interested in what Bovril is!
Still headache, nausea, snotty nose and didn’t sleep that well – little problems but feeling crappy.
S/B Dr Carby at midday. Very pleased with her, he’s never seen her look so well and she is incredibly well for just 6 weeks post op considering how ill she was. Possibly home on 18th unless conquer stairs beforehand.
Will have CT scan this week. All her bloods and levels are stabilized and everything looking good. He will see her weekly when she leaves.
Managed a shower and hair wash just like a normal person today. A great day!
More reduction in pills and nebs. Weight going up by .1kg each day.
Done a great blog – very tiring.
16.19 – done 10 steps!!!! Karen visiting today.
Thursday 5th January – day 42
Kerry meeting Katie today – transplant patient (young girl 6 weeks ahead of her – I spoke to her Mum a few times and said goodbye as they were finally going home in their yellow mini).
Wind still troublesome and new tablet for bones today – strict rules on how to take it but fortunately only once a week. Made Kerry sick.
Brian visited – said Kerry looks a totally different person. He is coming back later with details of her donor.
S/B Dr – CT scan good – shows a few changes and a wide airway but nothing to worry about – basically they look like a nice pair of lungs! Don’t need blood tests everyday now.
Spoke on the phone – she has managed 15 steps including 3 steep ones at the end. Physios happy to discharge her – spoke to Dr who came in when Dad there and gave the good news. She is free to arrange discharge for Tuesday. Kerry is thrilled – she is determined to get back to Jane’s asap, hence the mastery of the stairs. She already has a plan for next week having short times on her own building up. Well done Kerry – what a star.
Geof says she looks amazing – just like a normal young lady, her eyes are bright and she talks animatedly with normal body gestures etc.
Shower all on her own again today – warned it maybe still some time before she manages a bath – well there’s another challenge!!! I shall watch this space.
Friday 6th January – day 43
Kerry has been discharged from physio!!!!
Been walking around room without her stick today – wobbly but still upright and in one piece. Done all her care herself.
A bit disappointed that needs to have two nebs a day when home – thought they were only for in hospital.
Will need to have blood test on Monday before home, also they are a bit concerned about her weight – although creeping up its still quite low. Lets hope that doesn’t delay discharge – but they know best.
Saturday 7th January – day 44
Tom over and Kerry planned exciting trip out to McDonald’s drive through as a practice drive for Tuesday. All went really well – no panic at all and out for about an hour. Great idea – well done Kerry – and Tom.
Sunday 8th January – day 45
Much the same – still trouble with tummy and sickness but set for home Tuesday.
Monday 9th January – day 46
Lung function up from last week: fvc 52% and fev 57% so that’s brilliant.
Washed own hair today, very much self caring.
Tuesday 10th January – day 47 – and a RED LETTER DAY _ HOME!!!!!!!
I arrived at Harefield by 9.30 and packed up Room 246 at Parkwood and bid a sad in some ways goodbye – it has been a very safe refuge.
By 11am with Kerry and Room 4 packed up all set to go – just waiting for…pharmacy, clinic nurse and dressings.
Visit by Brian – donor was a 47 year old female who died in tragic circumstances – she was always going to die on that day. She was on the donor register as her choice and so no doubt she would be very pleased to know that Kerry has benefitted so significantly from her death.
Long day waiting for…pharmacy and waiting for pharmacy and waiting for pharmacy!
Kerry looking amazing and so wonderful to see her walking around the room and going off to chase up the nurse etc.
Finally left at 5.19. Kerry had no problem with the car journey despite traffic and we arrived back at Jane’s by about 6pm. Jane had put a welcome back banner and helium balloon up in the hall.
Kerry went straight to the kitchen and chatted away. Jim cooked delicious supper of casserole, mashed potato and veg and it was so lovely to sit down all together and Kerry tucking enthusiastically into her meal.
After this Kerry walked upstairs on her own and slowly got herself ready for bed. This is all so fantastic. Slight problem re the neb (the one we waited all day to make sure we had from pharmacy) – no syringes or needles so unable to mix and draw up!
Just hoping now for a settled night and restful sleep…
Wednesday 11th January – day 48
Yes – a good night sleep and long lie in till nearly 10 am and then awake for medicines and breakfast – 2 pieces of toast and Bovril and the realization that we need snacks prepared in the evening to sustain this hungry girl overnight!
Medicine routine seems to be fairly simple and Kerry well in control.
Up dressed by 1pm (both of us!) and out for short walk. I pushed wheelchair but Kerry walked with her stick whole way to 135 (pale house) and back. Fantastic start and great to have some fresh air. Lunch then a rest whilst I went out shopping in Walton and Kerry home alone for half hour -Kerry so un-anxious she slept like a baby on the sofa in the sitting room.
Kerry joined us for supper in the kitchen (corned beef hash – a first for Jane) and then rested awhile before making it upstairs for a…bath – yes a bath not a shower. None of this taking weeks to be able to get out of a bath – she practiced fully clothed – no problem and so went for it. Just shows what determination can do.
Very tired by end of the day so 10pm medicines and nebulisers, snacks organized and then I went to bed leaving her to do teeth when she was ready.
So, another epic blog but that’s it for my hospital story you have waited a year to hear!
I will update you all on the last month or so shortly but in the meantime, I hope 2013 brings everyone good health and happiness- Happy New Year!
Love Kerry xxx