Sleepy Hollow

Kath spent the first few days post transplant on Monday 30th September (Day 1) in an induced sleep - here are some of the entries from the diary I kept for her of those days:

Tuesday 1st Oct - Day 2 (my birthday!)

• Phoned at 6.30am for update - no real change
• Got to hospital at 10am - straight in using batphone and sit with you 
• Nurse jenny said: lungs doing ok - oxygen reduced down to 40% and sats 90%; heart is the issue - very slight improvement on last night but not where they want it to be so support from heart balloon pump machine (noisy piece of kit about size of R2D2); no significant bleeding; keeping sedated - overall stable and just taking things as they come
• The sight of the stacks of machines, ventilators, chest drains etc doesn't seem quite as daunting this morning even though have only had a couple of hours sleep so I am slightly less 'teary' when I see you  
• Am amazed at the nurse who is covering you for 12hours - does not stop once twiddling, checking medications ('plate spinning' as I call it) all the time chatting to you as if you're awake - terrific stuff
• Doctors kick me out at 11am so grab b'fast and pop up to Transplant Unit  - bump into Sita and Mickey! Had a good chat and they gave me reassurance. Good to see Sita looking so well
• Back to see you - physios do rounds and say chest looking very clear
• Consultant Jaz appears - lungs ok, heart sluggish - can take some time. Prob keep you asleep next couple of days - 'reasonably positive' for outcome. I think, well 'reasonably positive' sounds better than 'we have concerns' - gotta take the positives
• Sarah, Rose, Oli and David arrive
• Treat them to a BigMac for my birthday (we joke about 'happy meals') 
• Home and sleep for an hour, back to hospital for 6.00pm
• Evening - sugars very high is an issue - was as high as 22 down to 17 wants to be 6-10 range. Getting 40ml insulin to help which is v high dose. Lungs still ok. Giving furosemide to help wee - if no good will have to put on dialysis - hope not!
• Had a bit of a black moment but spoke to my brother who quickly snapped me out of it - phew.
• Saw Transplant Coordinator Ann - very very supportive and positive - stressed this is not unusual - Mr Tsui (Clinical Director and Surgeon who did op) keeping close watch and he seems ok that making progress if very slow
• Met night shift - Sarah and Oli come to see you at 8.00pm
• Leave at 9pm - home at 10pm - Rose had chinese and cakes with candles ready. Happy birthday!
• Have glass of wine - bad mistake - very tired; do Social media updates and bed at 12pm, wondering what the hell have we done? Soon learn that night-time is not best time of day to reflect on stuff as it can all go a bit Pete Tong 

Wed 2nd Oct - Day 3

• Phone hosp at 6.30am (no calls from them in night - phew) after usual crap night's sleep; wake to find someone has jumped on my chest in the night
• Steady night, improved sugar levels, off insulin
• Media commitments
• Helpful email from my friend Doc Martin (as he shall now be known) who has been there, done it got the T shirt (these become a daily feature - my thought of the day from him and prove invaluable coping with what lies ahead in next 24hrs each day)
• Hospital for 10.30am - O2 down to 22 (yey). Steady if slow improvement. Physios happy (yey again), X ray done - some shadowing on lungs 
• Bianca (transplant nurse) takes me for tea. Sounds like you were very very poorly at outset but they seem quite a bit more positive now. Tell her not to be too nice to me as I am constantly just one nice comment away from welling up. 
• Trying to wean down heart drugs but blood pressure up so will be slow. Keep you asleep today. Still on R2D2 the heart pump machine (boo hiss)
• Another nurse who was on on Monday just said you were really poorly post transplant, a little improved yesterday and much improved this morning but still poorly obviously. So you were worse than we actually realised on Monday. Happy I didn't understand this at the time as it was bad enough seeing you then anyway.
• Lunch at hospital, go and see the Pulmonary Hypertension nurses - they are all delighted and smiling for you. Home for 3pm
• Sarah and Oli come up at 5pm
• Started to open eyes WHAT!!??- Sarah rings me; Rose, David and I drop everything and hotfoot back to Papworth; we learn they are just reducing dose to make sure your senses are ok but won't wake you properly just yet
• Moved your arm (woo hoo)
• Saw Mr Tsui - said heart much improved - bestest news!
• Keep you sedated tonight and try and wake up again at 6am in morning
• Went for dinner nearby in Elsworth - same place as Monday night but we are all more relaxed and less zombie looking. Good food but service sooo slow 
• Come back at 9pm to see you for an hour. More eye opening
• Home at 11pm, media commitments, think about donor family and what they've been through but decide not to dwell on this yet as there will be time for this when you are home and we can take stock; 12pm bed

Thursday 3rd Oct - Day 4

• No calls in night again - phew, though 'jumping chest man' has been again, the bastard
• Got to Pap at 7am as want to be with you when you 'come round'
• Wouldn't let me see you (prob 'cos trying to settle you, as subsequently learn your heart rate went mental up to 200 when they tried to wake you, so they had to 'shock you' to get your rhythm back. Bloody glad I didn't see them with the paddles shouting 'stand back' as I would have freaked out. Totally. They say it's normal. To you maybe, I reply.
• They let me in at 7.30am and stay with you for half an hour - your face has a lovely colour today and none of that rubbish iv induced blotchiness you've had for last 2 years. I tell you this but you can't hear me. Sing 'I'm Still Standing' to you - softly so the nurses don't think I've lost the plot. Chat to you and tell you what's been happening and tell you off for not giving me a birthday card. Am a bit weepy. Girl's blouse.
• Not responding to commands but eyes open and leg arm movements so sedated you again and will retry at 10am
• Doctor said lungs ok and heart playing catch up but 'par for the course' - no signs of major anxiety from team which is reassuring  
• Went for bfast - came back at 9am - went into rest room and lovely Anne (one of the Transplant coordinators) came in, so had a chat. No one is panicking which I am taking as a positive sign you are heading right way. 
• Then came back to see you and Jaz said would leave waking you till 5pm and in meantime would try to reduce support of heart drugs and try and get you off heart machine pump as thought the drugs might be starting to irritate you ironically.
• Biggest issue is trying to wake you without you freaking about the ventilator stuck down your throat into your lungs (I mean, who wouldn't freak?)- this is what happened this morning when your heart rate went to 200. 
• Jaz basically wants to try and reduce reliance on all the equipment i.e. all the machines 'that go ping'.
• Rose, David came but doctors doing rounds so they shoot off to Cambridge instead. Sarah was coming but put her off till this eve when they try and wake you.
• Popped in to see Bernice who is back in Baron Ward (trying to bulk up) and came back to see you at 11am. I bloody well hate CF.
• Keep opening you eyes but not responsive - tell you that you are very naughty. Am a bit teary (again) - what a wus.
• Platelets being ordered to enable R2D2 balloon pump to come off this afternoon. Don't really follow this but if that bloody machine comes off, who cares? 
• Noon - been here for 5hrs....
• Left at 12.30
• Home for lunch and kip for an hour (wow that felt good and discover 'jumping chest man' only does night visits), get back at 5.30pm - Sarah, Oli already here
• Off the heart pump for two hours (4pm) and staying stable - AMAZING - this is biggest step for me to date. After some debate decided they are going to try and wake you later this eve.....the suspense is killing us...
• Turned off sedation at 6.30pm - now we wait.... I go to the visitors room with Oli to let the girls be with you to see you wake hopefully. David at his house tonight.
• Coming up for 7pm...what's going on?!!!
• Went in just after - lots of thrashing and eyes opening - allegedly squeezed a nurse's hand 
• Can't get you awake so go for a Ruby at Shilpa's up the road (highly recommended btw) and bump into Oli's aunt and uncle in there - weird. People actually go to Papworth Everard OTHER than to go to hospital? Had never occured to me!
• Back at 9pm
• SMALL SQUEEZE OF MY HAND!!!
• All drugs majorly reduced; but you are getting agitated about the ventilator so, as it is getting late, they choose to sedate you again (1/3rd of dose you started day on though) and will try again to wake again in morning. 
• If you continue to react badly they will do a tracheotomy and this will make it more comfortable for you when you wake. We resign ourselves to this.
• Much reduction in all the drugs today and getting rid of R2D2 is a big step forward. And the bay sounds so quiet without its racket....

Friday 4th Oct - Day 5

• Usual crappy sleep but must have dosed off long enough for 'jumping chest man' to do his stuff; phone nurse at 5am - to give drug to help wean off the ventilator and switch off propanol at 8am. Here we go again.....
• Get there at 8.30am but am not allowed in till 9am - you're groggy but recognise me and Sarah and nodding your head and we start blubbing - I quickly go and play team tag / swap with Rose (you can only have two relatives in CCU at a time) and bawl like a baby (jeezus, again?) in the waiting room and shakily text family and friends. 
• We play team tag for an hour - you can't remember why you're here (we tell you) or getting the call. Smiles at girls - squeeze hands and lots of nodding and shaking - you are able to move hands feet . Blow kiss at Rose
• Try to calm you about ventilator - heart rate's ok. Then get thrown out. 
• Stacie is in clinic today so we all go and see her - she has balloons and an emotioanl card for you. Cuppa. Try and get back to see you but can't.
• Saw Anne - reckons you won't need trachi - yes!
• Get talking to another chap whose fiancé is in theatre having her double lung and heart - unbelievable - two in a week
• Got to see you again about 12.30 - coming much more responsive with eyes getting more focussed and following people in room 9though you are having some delusions - probaly a blog on these sometime!- and played tag till 1pm - you were a bit icky and but we couldn't move you as it upset your heart so they cleaned you up and gave you some help 
• Lots of squeezes and nodding and new trick - kisses!!! Made me cry repeatedly. (Man up Graham!) Shrugs is also a new trick
• Went for lunch while they cleaned you, went to duck pond (the weather has been great thankfully) then it was quiet time (2-3pm) so rested in waiting room. Rang your Mum
• Bumped into Jaz - has asked them to take ventilator out - and after that next thing to aim for is to take chest drains out
• He said needed to be careful with drugs as you tend to react to them - we know!
• Back at 3pm to see you - more of same - hand squeezes and smiles
• We go for tea and walk round duck pond
• Came back at 5pm and ventilator is out!!!
• Here are some of your first words...I need a drink; Have I had it done?; Whats up?; I love you; Can I go to sleep?; I love you too" - more blubbing
• At 6.30 we go to Poachers for chick ham pie dinns back at 7.30pm and see you for 15 mins blew me a kiss bye bye
• Hospital said you were settled when rang at 11pm
• All knackered, media commitments and bed

Summary

Those first few days were incredibly tough but Team Graham is a strong one and we spent much of the time in each other's company and allowed ourselves to have a laugh and a joke amongst all the worrying moments. The support Sarah and Rose gave me was immense and, in turn, they had the support of Oli and David which was of great comfort - especially when I was at hospital on my own and I knew that they had company. The nursing staff over these days were brilliant - compassionate, caring, unstinting (is this why they call it CCU?) - the NHS at its finest and we all knew you were getting the best possible treatment.

So that's the end of my guest blogging for now as, with you awake, I leave you to take over the reins (collapses into bed.........enter 'jumping chest man' stage right)....