We were woken this morning at 5 am with a phone call to say that another heart was available; Rachel had woken at 3.30 am and asked for a drink and had to be refused, so she was told then. She didn't get any more sleep, unsurprisingly! The team had tried to postpone telling her the news so that she could get a good sleep - they're brilliant and really thoughtful of all our conditions and feelings. I called Vicki and Lawson and they drove over as we pulled our clothes on in that burst of adrenaline which we now recognise so well; when we got to the ward we went in to be with Rach - a tired but determined figure, who was sure that this would be 'the one' at last. Sadly, by 7.30 we found out that once more, the heart wasn't viable. Lawson stumbled off to work (his first day back, on reduced hours) while we breakfasted then did the food shopping at Tesco.
It's a strange feeling to get so excited and then to have nothing happen; how Rach manages to cope with it with such calmness and dignity is amazing. I feel as though we're in a boxing match and have just been knocked down for the third time; we're back on our feet but rather dazed and a little punch-drunk but ready to go on; you people in our corner are our refreshment and God gives us strength for the bout. In the words of St Paul...."this precious treasure—this light and power that now shine within us—is held in a perishable container, that is, in our weak bodies. Everyone can see that the glorious power within must be from God and is not our own. We are pressed on every side by troubles, but not crushed and broken. We are perplexed because we don’t know why things happen as they do, but we don’t give up and quit. We are hunted down, but God never abandons us. We get knocked down, but we get up again and keep going." So we press on - bless you for journeying with us!
Just to prove that Rachel wasn't too depressed by this morning, in the afternoon she went for a walk down the corridor (accompanied by physio, the VAD machine and sundry other pipes, tubes and small machines) and managed 18 steps. This is a world record and deserves a gold medal! She must have looked like a monster from Doctor Who with all the tubes and pumps whirring but we're so proud of her. If she has the energy tonight she will be looking at her new Kindle and starting to see just what it can do - I think we'd settle for a quiet snooze in front of the TV.
No day here is boring........
Love from Peter
ps from Vicki
When we saw Rach this evening she was worn out, queasy and had been shivery for an hour and needed some medicine to settle her down. She was also quite anxious about a few things. It is so hard to see her like that, I can't describe how much we wish we could do something to make her feel better. I had to settle for providing squash and reassurance and lots of big sister love. She has done great today and I really hope that now she can have a really good rest after all of today's events and start afresh tomorrow.
Rach has asked me to put a special thank you note on as her work bought her a present quite a while back and she has only just had a chance to open it today. Her face was an absolute picture when she opened it - it is a lovely thoughtful present! She really enjoyed reading all the messages in the card too. She wanted you all to know how touched she was and that she didn't mean for it to sit there for so long! A big thank you from Rach, and from the rest of the family, it was lovely to see a big smile on her face.
I should say that she does still have some presents unopened so if you haven't heard from her don't worry! She often only manages one present on a good day so we are spreading them out.
On a side note my mum's phone is being a little temperamental so it might be best to get in touch via email/via my dad for now.
Rach has had a mixed day, she felt rotten this morning but has finally had a top up blood tranfusion and was already looking more herself this afternoon and even better by this evening. She even had a hint of pink in her cheeks which we haven't seen for days.
We understand that there has been a chance that the doctors would accept a heart for Rach that might have needed some ECMO or VAD support. However because she is doing well she is now in a position where they can afford to wait for a heart that doesn't require any of these things. This will hopefully mean that when a heart comes, Rach will only need one operation and will be hopefully getting a really good heart. This doesn't change her status on the transplant list in any way but may mean she has a bit more time to wait for the right heart. We still hope that a good heart will turn up pretty soon though!
On a lighter note, I have posted a photo on the 'my photos' page with Rach's favourite suggestion of what to do with her 'Merry Christmas' letters. We've kept the spares in case she wants another change later as there were plenty of good suggestions. Thank you for all your suggestions and messages - Rach was amazed how many people wanted to join in :-)
Rach had a good number of hours sleep but was still wiped out today. She awoke in the early hours to receive some more painkillers before managing a bit more sleep.
The day has been fairly similar to most others at the moment. She made good progress with the physio as she was able to walk to the wall twice from the end of her bed and had to fend off their enthusiasm to get her out of her room and into the corridor for the first time. Whilst they think her muscles could be fit enough to manage a longer trip, it's the chastening fatigue she experiences when doing anything physical which prevented this today.
A new line was put in (another passage for painkillers and drugs rather than a repositioned arterial line) which caused her some discomfort but nothing major.
She's becoming more sensitive to the state of her tubes, dressings and lines and is beginning to worry more easily when they show potential oozing. The nurses are doing a good job of reassuring her that everything is fine (which it is for now) but an understandable sense of anxiety shows in her. All we can do here is to recognise this and be there to provide comfort, remind her of the outstanding job she's done so far and help her stay focused on keeping her mood up.
Speaking of which, her friend Danielle came to visit today which really cheered her up! She's had a good week for visitors with her other friends Charlie and Sammy also travelling across the country to catch up, show support and just talk normally with her. It's also really worth mentioning how much of a smile we saw when she received the various cards from fellow HVJ members in America, Australia and the UK.
The wait continues for a while longer and we're all hoping it comes soon. I desperately miss her after what is almost 8 weeks of being in the ICU.
A treat for everyone tonight, it's going to be a Mam update. But before I hand over, Rach wants to set everyone a little challenge. She has had some jelly letters on her window that spell out Merry Christmas. Rather than chuck them now christmas is over she wants to come up with something new for them to spell out.... so anyone with a good idea, please stick it on the guestbook and Rach will choose her favourite :-) There's a photo of the letters on the photos page in case you're not sure what I'm talking about! Now I'll hand over to mam....
Hello everybody ,
Caroline here to give Peter a break.
Rach continues to work so hard , bless her.She managed more steps today and walked to the wall in her room. This is probably 2 or 3 more steps . Rachel is absolutely wiped out when she does this and then has to sit in a chair . The physios mind are very pleased with her progress.
Rach has had a couple of stitches put in her V.A.D wound so hopefully this will stop oozing now.
We understand that a heart may become available within 2 weeks or so roughly speaking.
Please pray 4 Rach to have a good night ‘s sleep and also 4 pains in her left foot to go + the obvious .... a new heart one way or another – miracle from God , or transplant please.
We can also do some thank you prayers that at the minute her arterial line is o.k and for all the muscle strength she has gained .
Peter and I were able to enjoy our Christmas presents from Lawson today. We dipped into the Science Museum and saw a couple of steam engine demonstrations. We then went to the Hilton for Afternoon tea .My phone was to hand all the time just in case , but we did our best to switch off and did have a lovely time.
Thank you again for all your prayers and love – we feel so supported .
Well it's another good day and the first of the New Year but no heart yet I'm afraid. Rach had a rough night's sleep but in spite of this, has still managed to make good progress. She managed a few good steps which really impressed her physio and has eaten a bit more.
Good news too for her arterial line - this had been causing her a lot of hassle and discomfort and there was concern that this would need to be changed (no easy task given that she is running out of arteries which can be used). Fortunately, one of the doctors has managed to get the existing line to work more effectively so we're in the clear for now.
Her mood is determined rather than positive which is very healthy and she seems ready, both mentally and physically, for another huge surgery when we get the nod for the transplant. I'm really hoping this comes soon. The waiting is strange given that we had two calls so close together within a day of being listed but I'm optimistic having poured over the statistics for transplants listed on the NHS website. This makes for interesting reading if anybody is like me and draws strength from this type of thing.
I'm afraid it's back to Vicki again. I can't believe how lovely it was to have Rach do her own post yesterday. I was so proud of her as it takes an awful lot of effort for her to manage even a small amount of text. I've uploaded a photo of the star chart she was referring to in her post - we only made it the day before and already she's ticked another one off! She's come so far and is working hard to tick off some of the other goals on there.
Rach had a migraine this morning but once she'd had some sleep still managed physio this afternoon. She did some in-bed cycling - and before you ask I have no idea quite how that worked! I do know that the physios were really impressed with her and she was quite exhausted afterwards.
Rach has been told to eat lots and of whatever she wants as she has many calories to catch up on. Today that has included milk, soup, cocktail sausages and some pear. She still has the feed overnight but everything she can eat during the day helps to build her up more. I did my best in tesco earlier to find all of her requests, elbowing a few new-years-eve-panic-buyers out of the way where necessary!
Rach needs a new arterial line as the current one isn't reading properly. Unfortunately they are running out of arteries for this line and may have to do an extra long line in a current site or use her groin - neither are ideal. Rach isn't too happy about this understandably.
So this brings us to New Year. It will be no surprise that our big hope for this new year is a new heart - a beautiful healthy heart with many years in it. And that Rach will be as fit and healthy as possible to recieve it. We also hope for a happy and healthy year for all of you - our friends, family and fellow heart journallers.
Rachel developed a temperature today and has now got a staph infection, for which she is now receiving a new antibiotic; she is quite tired and finding it hard going. The docs put a new line in her today and she is very sore and wondering how she's going to be able to sleep. It is hard to see yet another obstacle put in her way, but we should really be very thankful that it is nothing more serious.
We are still feeling the effects of sleepless and tense nights; while we'd really like another couple of nights decent sleep we'd also like a good heart to be found quickly... but as the song goes, 'a good heart is hard to find'. So far we've been amazed by the timing of events on our journey; each time we've needed something it has been provided just at the right time - so we believe that the right heart will come at the right time. We just need patience and endurance to keep pressing on each day. As ever, small acts of kindness from lovely people give us energy and hope on a daily basis.
Another batch of letters, cards (and bills) came today and we really enjoyed catching up with news of friends, old and new; they have nourished us and reminded us of our life outside the hospital walls. We ask a blessing on them and all of you, you are a lifeline for us.
Caroline and I have just spent a happy hour talking with Rachel; it's amazing to be able to have a conversation with her after all the weeks of silence. She is still determined to get better as fast as she can, but she's now added a touch of her old commitment to customer service! She is no longer behaving like an angelic being, much more like someone who will 'not suffer fools gladly' and she has been quite grumpy as a result - we absolutely love to see this again!
Medically, the only issue we're aware of today is a discharge from one of her vad tubes, which is leaking through her dressings and causing some soreness and pain. Rachel has fixed on this as something to fret about (and of course she has reason). As I understand it, Rach currently doesn't have a temperature so there is no immediate concern and the area will be treated tomorrow; in reserve is the new antibiotic, but we'd prefer to keep this back until the transplant rather than compromise its effectiveness by using it before.
I'm very aware that I may well not be making sense, we've had a good day but tiredness is making us all a bit fuzzy. I'd better say goodnight, with many many thanks for your support. You're amazing.
Rach didn't get much sleep and is pretty tired and was a little anxious when I first saw her this morning. However she successfully had her chest drain removed this morning which was a big relief to her. She's stood twice with the physios and sat in her chair for a bit. Most importantly she fitted in a nap this afternoon. She is currently chatting to Lawson and tucking into some spaghetti hoops.
Considering the events if the last few days she is doing well and remaining remarkably positive.
We're all hoping she and the rest of us get some much needed sleep now.
Here we go... we've had another offer of a heart, this time no risk factors involved. If it proves to be viable we should know by midnight-ish and Rachel could be in surgery 'in the early hours of the morning'. Based on our experience this could mean anytime between midnight and midday tomorrow. It looks like our long day is going to be even longer, but we hope it will end happily. Please pray for Rachel, for the surgeons and for us! Thank you!
Our day started at 2.50 am with a call to tell us that a donor heart was available; we were needed immediately to discuss this as the heart was in a high-risk category. Did Rachel wish to take this risk?
A straightforward 'no' seemed appropriate, but we were given some new information; as far as we understand it Rachel has a rare infection and the current antibiotics are barely holding it in check; a new antibiotic has been developed (on Thursday last week) and there is some hope this can tackle the bug - but the new anotibiotic will work best once all sources of infection have been stopped (ie after transplant surgery) - it shouldn't be wasted now in a vain attempt to beat the bug. We now understood that keeping Rach alive has been a miraculous achievement but that - timewise - we were getting closer to (life-threatening) major problems.
This gave us the now expected cold shock and we began to think along the lines 'how many more days of life can Rachel have on the existing regime/how long before another heart becomes available?'. On balance, Rachel decided that the risk of 'high-risk' transplant was less than the risk of waiting longer in the hope of a better heart. In the end - and with only minutes to spare - we committed to the transplant. Then we sat and waited - with Rachel mainly, sometimes just outside her room, talking, listening, crying, holding her hand... you know how hard such waiting times can be.
After many hours of waiting we were finally told that the heart had been deemed not viable.
We knew that cancellation happened but this came as a shock to Rachel, who then started to ask difficult questions like 'how long have I got?' - not easy to respond when you're spaced-out with fatigue and day-long tension. It's been hard for us all and we're in a bit of a whirl just now, all desperately needing sleep to reset us ready for the next day.
It's not all been bad. I had a joyful and deeply happy time this morning, when Rachel and I held hands and talked a bit; then she fell asleep holding onto me and I was able to watch her and drink in the features of the girl I've become so desperately fond of. So much love! What joy! The times of deepest pain seem to also produce these moments of blinding emotion and realisation; when all the cares of the world and all the need for worldly things just melt away in the recognition of something far better, eternal and precious.
And then the great satisfaction of seeing Rachel demolish a bowl of spaghetti hoops and a cup of peppermint tea - like a hungry little bird tackling a particularly juicy worm. No father ever rejoiced over his baby's first steps, first words, first solids like I did today over my daughter.
So - as Pollyanna said - tomorrow is a new day. It may contain a new heart; it might be uneventful; Rachel may get better; the bugs may win for a time.... I'm content to stop fretting about it and enjoy my lovely family and friends every minute I can today. And my cranky old bed looks very appealing just now!
We got a call at three to say there is a heart but it falls into the high risk category so Rach would have to decide whether to go ahead. Rach has thought it over and agreed to go ahead. She is scared but not panicked. Now we just wait for it to be confirmed the heart is in good condition and for it to get here.
Hope that everyone has had a lovely Christmas with family and friends. Rach wishes you all Merry Christmas too.
It's been a fairly quiet day which has been nice. Rach has had a day off standing/sitting in the chair which has given her a break. She didn't sleep much last night so I think that was good. She opened a few presents with us all this morning and requested a homemade turkey sandwich for lunch which we were very happy to provide. She is allowed to eat anything she wants - even Mcdonalds if she wants! It's all about getting more calories in to build her up a bit more as she is even more tiny than usual at present.
Ideally Rach's chest drain would be removed today but Rach is quite nervous about this and said she wasn't ready. Hopefully after a good sleep tonight she will be ready for this in the morning and hopefully this time it will be without drama!
We had some presents with Lawson before he went to spend some time with some of his family and then mum, dad and I had a Christmas dinner in the bungalow which my dad cooked - it was delicious! I've then finished off the day watching a bit of TV with Rach which was lovely and relaxed and quite a normal feeling thing to do.
One highlight for my mum today was that she got her Christmas wish for us all to have a cup of tea with Rach. We all had a cup of tea and Rach had peppermint tea! You wouldn't think a cup of tea could feel so special but I know it did for my mum.
Rach is adjusting to all the news of yesterday slowly and it was good to talk to her a little more about it today. She is being so brave though and just seems focussed on wanting to live, and wanting to live with Lawson. He’s a lucky guy!
Thank you again for all of your support and best wishes to the fellow heart journallers for safe surgeries and speedy recoveries. Hope you all continue to enjoy the festivities.
Just a quick one to add to Peter's excellent update!
I'm so so happy to now have a definitive outcome for Rachel. She told me (in her own voice now this is back!) that she'd known that she was probably going to have a transplant some time ago. Apparently the surgeons were quite realistic with her which, considering how she took the news today, was a good thing. She accepted the decision and signed her consent knowing it was the right thing to do for her.
As peter rightly points out, this is another major operation with a new set of risks both immediately and over the medium to long term. It will also involve retracing her steps of recovery but at least this next time she'll be something of a seasoned pro with knowledge of what to expect and even more self-belief in her ability to recover.
One thing that is certain with a heart transplant is that there are major long term issues associated with the various drugs she'll be dependant upon. These have not yet been fully explained to her but she does have a booklet to read through when she's ready. However severe some of these may seem, they're a small price to pay for a new chance at life. In this respect, I can't help but feel positive about the news and that her acceptance onto the urgent list is a really wonderful Christmas present.
I wanted to write a journal but it's been a long day and my Dad has done a great job so I'll leave you with his update again for today....
Another day on the rollercoaster. We heard - as we went into visit Rachel - that she had a good night's sleep last night and seemed fairly bright this morning. As far as as we understand the conclusion has now been reached that the only viable treatment for her is a heart transplant. The risks of remaining on the Bivad were increasing and - in her condition - it shouldn't be regarded as a long-term option. Rachel is now free of pneumonia but the superbug remains a threat and isn't reducing any further. An implantable device would expose Rachel to a much greater risk of the infection spreading. So a heart transplant is a much cleaner way of getting rid of all the tubes, which bacteria love, and giving Rach a better chance of fighting the bug 'normally'.
We believe the statistics for the surgery are as follows - 9 out of 10 patients are expected to survive the operation and 8 out of 10 to survive the difficult 365 day period following surgery. If she survives, her life will depend on her faithfully taking immuno-suppressive drugs, which may compromise her immune response and damage her kidneys. Rach was asked if she wanted time to think about this but she decided immediately that she would go for it, so she is now on the 'super-urgent' transplant list. Apparently there are 2 national lists; the 'urgent' list is theoretically for those awaiting donor hearts but in practice nobody on this list gets a donated heart until their condition deteriorates sufficiently for them to be upgraded to 'super-urgent' - this means that Rachel could be in surgery receiving a new heart any time from this evening to 6 months (or longer) away. We're going to have to practice our 'hurry up and wait' routine a lot more.
Rach's trachy was removed this morning, we stayed with her while this was done; then we had the utter joy of hearing her voice again - first words 'I can breathe' with a big smile. We were able to have a proper conversation at last, then we talked about the transplant and her feelings. She was worried her mum would be upset! The was a lovely time for us. Once her breathing and swallowing were checked out, she ate some biscuit and half a pot of yoghurt, washing it down with some fizzy Sprite; she is now allowed to eat anything she likes and has ordered a turkey sandwich for her tea. Yay!
Later, Rachel got up into a chair and took her first faltering steps. These moments are treasures I can't fully explain. We spent most of the rest of the day with Rach, signing various consent forms and going through what we can expect before, during and after surgery. I think we're all still coming to terms with the news, though Rach is doing astoundingly well and has chattered pretty much non-stop. She is looking much more her old self and says she feels a lot better just over the course of the day. Like I said earlier, it's a real rollercoaster.
We all send you our love and hope you have a wonderful Christmas, full of friends and family, love and laughter
Today has been a hard one for Rachel; she didn't get much sleep last night and she has spent most of the day being sick into one of those wonderful hospital bowls. Much of the time she has been a dejected and unhappy figure; she was worrying that if she kept on being sick she wouldn't get better. It's hard for us to see her like this and we have all felt rather off-colour in sympathy (nothing real, just aches and queasiness). There's nothing that a good nights' sleep won't solve!
Being more positive, Rachel's chest x-ray showed that her lungs are working well even without the ventilator; this is a good step towards her getting the trachy tube removed. She's under orders to do a proper cough at least twice an hour and she obeys this to the minute. We're longing to hear her voice after all this time. Rach managed to sit in her recliner chair for 4 hours today - a new world record (tell the Guiness people, somebody).
We did the Christmas food shop at Tesco - including a turkey crown - despite having to battle the combined hordes of Wythenshawe shoppers. We're probably emotionally rather weak, it seemed like a real, battle! Then Caroline and I registered with a local doctor - just in case..... tomorrow e go in search of an inflatable neck pillow for Rach, we'll probably have to go to the airport to get one.
Rach has had another relatively busy day. She didn't get much sleep as she was on the ventilator for a while through the night. The doctors also wanted to do a bronchoscopy today which she was a bit nervous about. She was sedated for that and the doctors could check out the lung that collapsed to see how it was doing. They also did a chest xray to get more information. On the xray the lung is looking quite well inflated. The doctors have decided to put her back on the ventilator for a few hours tonight and then a few more hours in the morning to make sure the lung is getting well inflated. They will then repeat the xray tomorrow when she is just wearing the trachy mask (no pressure support) to check that the lung is still inflating well. Fingers crossed this will be the case.
Rach was briefly sedated once more while they did the bronch so visits have been restricted but we did get longer with her this evening which was lovely. The last few days she has been so tired that we have to ring ahead and often she is doesn't want visits. It is really hard for us to get used to not seeing her so much but we know that she is working so hard that she has more than earned her rest. It does also make the chances we get to have a longer visit so very precious. We left her set up to watch Harry Potter on TV tonight - hopefully this will be a good distraction whilst she's on the ventilator.
She has once more proved what an absolute sweetheart she is tonight by giving Lawson a note that she has written for him to read when he's feeling sad. I can't believe she's still looking after everyone else so well.
So we have reached 6 weeks. What a long time. We are starting to feel like CTCCU old hands now. I regularly teach people to use the coffee machine and explain to worried looking people that waiting for a while doesn't mean something terrible has happened - just everything takes ages in intensive care. I like to think that we can be a friendly face for newcomers like so many were for us. I especially like to reassure them that their relative are in the right place and that the care here is second to none. We can't say this enough.
Thank you again for all your support and messages.
Rachel's mood is still a bit down. She's in some pain from the lines and tubes but the good news is that she's had another removed which had been seeping. This eliminates another potential site for infection.
She's refused visitors (us included) on the basis that she's been far too tired. Bless her, everyday she's being pushed and worked hard as she continues to move towards walking. Today the physios have had her standing again which is excellent and she's managed to get herself back into her bed without the need for the winch. We did manage to see her for a few minutes at the end of the day at her request.
She's also been moved onto eating foods! I asked her what she thought of the menu (very dense lemon flavoured mulch, curry, toast, tomato soup) and she didn't seem keen. She did choose to have tomato soup and toast but didn't manage to keep it down however we should remember that her stomach has not had anything in it for almost 6 weeks.
Hoping her mood is better tomorrow and that she manages to keep food down.
A quieter day today, starting off with muted smiles (wait a minute, this sounds like a weather forecast...). Rachel was still processing the information she got yesterday and quite muted, though with a few small smiles on her strained face. Nurse Katie decided it would be nice for Rach to have a pamper day, so planned to wash her hair - but had to postpone it when the physios came in early. They got Rachel standing on her own, though this took all her energy and she had to be 'winched' back into bed. Then when the physio left Rachel saw the psychologist, who gave her some good pointers on living for today, acknowledging anger and sadness but then moving on via a favourite scent/flower/experience/place.
Unfortunately, Rach then developed a migraine and had to cancel the rest of her appointments for the day; she slept through this afternoon. We understand that she is now awake and recovered enough to have her hair washed tonight.
The last two days have been really hard for us all; we're hoping for a quiet night with good sleep before the challenges of tomorrow.
This morning Rach was told the results of yesterday's tests and the three possible options for moving forward were discussed again. She has been told this previously but I think this is the perhaps the first time she has really started to take it in. Luckily my mum and dad went to see her shortly afterwards so that she could have a chance to react to what she had been told. She was very upset and angry. Whilst this is part of the process of her coming to terms with this situation it is hard for us all to deal with. It is good she is starting to understand what is happening but how we wish she didn't have to deal with it all.
Over the rest of the day the physios came and Rach has progressed to sitting a chair for a while. The SALT team came again who assess her swallow and plan moving forwards with eating and speaking. They have given the go ahead for her to try some 'food'. The nurse was trying to persuade her to try this in the afternoon but I think with everything else that had happened she was worn out and not very interested.
The other thing that was planned for today was to remove some of her chest drains. Unfortunately when they did this one of her lungs collapsed. This has now been rectified and is ok but was an additional hurdle we wish Rach hadn't had on an already challenging day. Although they could do this with a local anaesthetic she requested a general and they agreed. The nurse rang and said when she woke up she smiled when they told her it was all done.
It has been a hard couple of days and I would ask that you keep on praying for Rach, for strength and for her to get the right support to help her come to terms with everything. In some ways I think she needs this more than ever.
Rach has had a very busy day today which has mainly centred around a fresh assessment of her heart. This consisted of a transoesophageal echo and a brief period of time with limited bivad support as the pumps were turned down. In addition to this, she was temporarily sedated, was put back on some assistance with her breathing which has now been withdrawn and further physio to prepare her for standing tomorrow.
Following her tests, we had the opportunity to meet with the surgical team to review her progress and get an update on her long term prognosis.
It's important to state at this point that Rachel's case is exceptionally rare and DOES NOT reflect the typical experience of those undergoing heart valve surgery. Her family and I thought it was very important to state this as we don't want to cause any undue concern to those of you who are about to undergo surgery.
Her right ventricle is looking quite strong and stands a good chance of requiring no long-term support. This means that she is more likely to be able to receive an LVAD implant if necessary as support for the right ventricle can probably be withdrawn. Her left ventricle however has not improved and currently has lost 2/3 of it's function. This is not to say that things couldn't change but it is disappointing news and a blow for the chances of full recovery without further intervention. She is also having blood analysed to see if it contains any antibodies which would complicate or prevent a transplant if necessary.
Whilst it's good news that the surgeons have not ruled out recovery and are currently planning for all outcomes, we cannot take for granted that an LVAD or transplant would definitely be possible. Her infections are what complicate this.
Even when her infections are cleared up, this does not mean that they are completely removed from the body. Much like a cold sore virus which flares up when you become stressed or tired, so too could her infections. This is particularly important given that she will be living with immunosuppressant drugs if the LVAD/transplant options are selected. As the name suggests, these drugs deliberately weaken the patient's immune system in order to prevent organ rejection and so would leave Rach with a potentially high risk of repeat infection which could make both strategies unsuccessful.
No decisions will be taken on what to do for at least another 2 weeks and even then, she will be reassessed and could remain on the bivad for even longer to buy more time.
The good news is that the surgeons would like to remove the tracheostomy tube as early as possible to remove another potential source of infection. Rachel's mood is great (she doesn't yet know the full extent of what may happen) and she's looking better every day despite her heart issues. The physio is going to be getting her out of bed tomorrow for the first time with a view over the next few days to start her walking. She has been upgraded from taking sips to having full drinks of water and is overjoyed with this.
We feel as though today has been another reality check for us all. We've had a lot of little positives over recent days but today have been reminded that despite this, she is critically ill. All three options are very high risk as they all involve further surgery and come with a list of complications. We're reassured though by the skill and experience of the team at Wythenshawe and trust entirely in their ability to make the right call.
A dad update for yesterday...
Rachel is doing well; her kidneys continue to work unaided - I think it's 3 days now since the machine was disconnected - and the docs think this a very positive sign that they are getting back to full working order. The infection markers are reducing again. Rach managed to do her physio today and even sat on the end of the bed without going dizzy. The pump supporting her right ventricle was turned down a little without any ill effect and - all being well - will be turned down a little more tomorrow.
On the minus side of the equation, Rach has so far been unable to tolerate the speech valve so remains mute; suggesting that the muscles in her throat are very weak and will need work. She's bleeding a little from all her lines, this is caused by the blood thinners needed to prevent clots when the pumps are cycling her blood. Rach is quite subdued, I think she's begun to appreciate the enormity of where she is and the uphill climb ahead - she asked us earlier 'will I get better?' - I guess that when she hears people planning to reduce the flow on the machine keeping her alive it's fairly natural to fear the worst!
The best news for Rach - she's been allowed a few sips of water; this seems like the best present anyone could give her.
I think I am starting to understand why the doctors and nurses keep telling us to look at long term trends with Rach. It’s amazing how different she can be even from one visit to the next, never mind one day to the next.
Her infection markers were back up this morning which they thought might be caused by another of her lines which needed removing. I really hope this is the case and they will go down and keep going down this time. When I saw her early afternoon she was very tired, having not slept well. She keeps apologising that she’s not up to much when we have visits like that – she is so sweet.
Which reminds me – I asked her if she wanted to ‘say’ anything on the journal. She thought for a while and then said ‘thank you’, followed by explaining that when she has some energy she is now able to read text messages on her phone. She can’t reply at the moment though as she still needs to build up strength in her hands and she wanted me to make that clear so that no one thinks they’re being ignored! Please bear in mind that she's still catching up with everything that has happened whilst she's been asleep (we're slowly explaining more) but keep encouraging her and let her know what you've been up to!
When I went to see her this evening she looked better, more rested and comfortable. The physio was really happy with her today as she was able to sit on the edge of her bed unsupported – they were very impressed she managed this. She said it made her feel very dizzy which is normal after so long lying down and is also due to her blood pressure not being normal due to the bivad support.
At the moment her kidneys are holding their own – please cross everything that this trend continues.
Once again though it seems that the highlight of the day was drink related! She was delighted to tell us that she was allowed a bit of orange juice. She can’t swallow it as her muscles are too weak but was allowed to swill it around like mouthwash and in Rach’s words (via lipreading).... ‘IT WAS AMAZING!’
Lots of love to all and thanks again for sharing this journey with us and for all of the messages,
Rach is doing a bit better today. The infection markers have settled down a little and the doctors think that there was perhaps some infection starting with the line that was removed yesterday. Thankfully now it has been removed they have gone down a bit again.
Rach is struggling with really wanting a drink, a common side effect of a trachy. The nurses give her little swabs with water on so she can moisten her mouth but I don't think it's the same as a cup of tea!
Her nurse this morning has put a new table right next to rach’s bed with her radio, phone and other bits all within her reach. Rach is able to pick up and use stuff more and more each day, although she is finding her right hand stronger than her left – as she is left handed this is making things a bit more challenging. It’s great to see the progress though.
It’s five weeks today since Rach went into hospital in Sheffield. Although we had to contend with the trachy being required this week, we have seen a lot of progress in Rach’s movement and in how alert she is. It’s lovely to talk with her and be able to be a bit more involved in helping out – moving pillows and getting her things, and trying hard to make her smile! She is working so hard and proving exactly what a tough cookie she is.
A few people asked about an address for posting cards. The best place to send them is to the flat. The postbox is only little but cards will get through fine. The address is below:
We will happily act as postmen and deliver anything to Rach that comes here. We've been allowed to stick up some cards and a few christmas decorations on the windows that are in front of her so she has them to cheer her day.
We're having an early finish tonight as Rachel is tired after a day full of physiotherapy and lipreading. She is really doing well and seems bright and responsive; she opened her first card today and read another one without help (incidentally, thank you from Rach for all the cards you've sent her). Now that she has some movement returning she is able to work her Tv control, pull her pillow down and her sheets up - and wriggle her legs into her favourite sleeping position. It's a joy to see her smile.
The lines supplying Rach's kidney support from the filter machine had been in as long as permitted, so the nurses gave Rach a quick top-up on the machine and then removed the lines completely. We now want her kidneys to function without support; if they don't work well, a new set of tubes will have to be fitted, with the resultant extra scarring. Poor girl, thank goodness she had previously decided that she wouldn't worry about scars so long as she was well.
The doctors are a little concerned that the infection 'markers' - which they monitor daily - have risen again; this could mean a new infection or indicate that the old one is fighting back in some way. But that's the only blot on the landscape, thank God.
Vicki's already posted a really positive update but given that today has been such a great day I wanted to share my own thoughts as well as the details of the meeting her mum (Caroline) and I had with Rachel's new clinical psychologist.
I'm over the moon with the change in how she's doing! Whilst difficult at first, we're finding that with some persistence from Rach, she can get across 75% of what she wants to say to us. Can you believe that the first things she wanted to check was whether we could put Harry Potter on and was her mum ok!? What a sweet heart! This comforted us all no end as it reassured us that her immediate concerns were not with things like pain or confusion and also because it shows us that she's not impaired.
She mouthed to me that she missed me - I can't begin to explain how much I cherished this and telling her how much she meant to me.
We met with the transplant team's psychologist, a lovely and warm lady called Zoey who will now play an active role in assisting with her emotional recovery. She said that whilst the surgeons are absolutely committed to helping Rachel physically, often their focus is too mechanical. Whilst our perception has been that the team has been absolutely outstanding thus far, I agreed with her point and am very glad to have her on board. Caroline and I explained how she'd been coming to terms with needing heart surgery and how we thought she could best help her. We explained what had happened since being admitted and the limits thus far of Rachel's knowledge of the situation. Zoey will now see rach once a week and continue her support as an outpatient if rach would like this.
Her movement is coming on leaps and bounds and she could give my hand a nice squeeze earlier so we're hoping she'll be able to write soon.
I forgot to mention yesterday that the doctors are going to assess her breathing and movement over the next 10-14 days before evaluating her heart function to determine what action is required. These are still the outcomes of recovery, implant or transplant although when swapping the circuit the left ventricle still appeared weak. We're hoping that her positive mood and new-found sense of control are indicative of a surge in improvements which will carry on to her heart.
Apologies for the lack of update yesterday - everything is fine though. If anything we were a little overexcited because we could communicate a lot better with Rach yesterday.
I went to see Rach yesterday, early afternoon, and was told I would have to wait as they needed to switch the Bivad circuit over. 2 mins later the nurse came back and said Rach seemed a bit distressed and wanted to see me. I went to see her and was trying to reassure her about the procedure but she kept on gesturing..... eventually I told her that I had brought Harry Potter audiobook in as requested. Cue instant smile and relaxed Rach. I think I'm going to lead with Harry Potter from now on! It made me feel a lot better that once again rather than being worried about the procedure she was worried about Harry - I hope this trend continues!
I bumped into Jim Barnard on my way out and had a quick chat with him. He is pretty happy with Rach's general progress but would like to see her kidneys improve as that gives her more options moving forward.
After a long wait in the waiting room (aka my second home) I rang through to the nurses who told me that the switch over had gone fine and I could come see Rach when her dressings were done. I knew they'd given her a bit of sedation but when I did finally get through she was wide awake which was lovely. Comunication has been much easier today - between the use of a new sheet with different pictures (*many* thanks to Kerry for suggesting that and to Ian for help with printing) and better lip reading and her hands being stronger for gestures.
Whilst I was with Rach I could tell her that her friend Sammy was coming that evening. Sammy had had a meeting in Manchester that hadn't gone so well and so I asked Rach if she could try and cheer Sammy up a bit. Well she took it very seriously! I practically had to peel Sammy off the ceiling she was so happy after seeing Rach. Rach showed off the new and improved movement in her arms and then had a conversation with Sammy- a real conversation, helped by the fact Sammy is pretty adept at lip reading.
I can't explain what it's like to talk to Rach again and have her respond. Even silly things like telling us she was jealous about a drink we'd had. She had a tele in her room again and with a bit of help could manage to work the remote. Even typing this I am struggling to hold in tears. My little sis is returning so much more every day and it gladdens my heart.
She has a lot of work to do over the coming days and she is finding it hard at times and having moments of being upset - mostly when she is tired. Please keep praying for her, for all it is lovely to see her returning her infection, kidneys and heart all need to improve still. But if you fancy a jig around a room (as my Dad previously suggested) then I think yesterday warranted one.
I thought I'd do an earlier update today as I keep running out of energy by the time we've done the evening visit etc.
Although yesterday was a difficult day, so far the tracheostomy seems to be doing its job well. Rach remains on a tiny bit of sedation but seems very calm. She has been doing some very productive coughing and finally some of the rubbish in her chest seems to be moving. I am hoping this will help her feel more comfortable and make her breathing easier.
She has been awake today for short spells and continues to nod/shake her head when we talk to her and I even got a little smile this morning. I also showed off my new hair cut (my hair was getting a little scary) and got an eyebrow raise which I'm interpreting as a positive response. It certainly wasn't a grimace! It's lovely to see her calm and she seems to be more comfortable whilst sleeping too.
Rach was going off for a routine scan this afternoon which meant disconnecting the kidney machine. They will leave it off and see how she goes once more without it.
In other news, Spencer the teddy took his duties of looking after Rach very seriously and personally cleaned up some oil that leaked out of part of one of the machines (Gabi - I think he may still have been trying to wear black on your behalf!). This means that he has been rechristened Captain Spencer and has had to be retired from active duty with Rach and come to stay with me. I have got some new Spencer cadets however and the first cadet went back in last night so Rach has clean cuddle company round the clock. I've attached a photo if anyone's interested. It may seem silly to have a teddy but I like to think it's a comfort to her to have something non-medical in her room.
We are all a little tired and battered by events but continue to hope that although yesterday may have been one step back, hopefully the next few days will bring a few forwards.
Thank you again for all the support. Sometimes thank you doesn't seem like enough of a word - the support really does mean the world to us and to Rach.
Late last night, it was decided that due to the increasing difficulty Rach was having with her breathing she was to be reintubated with a view to performing a tracheotomy today. As a result, she has been re-sedated, has undergone another surgery and a tracheostomy tube is now in place. This gives the doctors access deep into her lungs to allow them to clear the build-up which is affecting their function as a result of her continued infection.
We've been told that the tracheostomy tube is very often the last piece of equipment to be removed from a patient once in place meaning that we will not hear her voice again for quite some time.
Despite acknowledging that this really is the best thing for Rach and conscious also that real effort has been made by the nursing team to avoid this outcome, it is absolutely devastating to see that her efforts have gone unrewarded. I find it especially cruel that this comes just as she's regained the fundamental ability to communicate again and experience some freedom from what I imagine to be an otherwise isolated and depersonalised state.
Vicki has a friend who helps people who can't otherwise communicate and has suggested the use of a picture/phrase board containing things like 'I'm too hot' or 'I want to rest'. We're going to ask the nurses about this tomorrow to see if this could work for Rach. I've also downloaded a basic painting app on my iPad which may help her write what she needs, wants and feels before she regains the dexterity necessary to use a pen.
In terms of everything else, the dialysis machine is back on for now but not a long-term issue and her heart function is still fairly unknown as the more pressing issues of breathing etc. are addressed.
So a difficult day but not one whose challenges we can't meet.
Rachel has continued to work with the physio today - for over an hour this morning followed by other sessions. She is very weak and minor movements are celebrated as small steps forward. She has also been able to whisper a few more words to Lawson. She has been on the kidney machine again and is breathing oxygen through a mask; the mask has been changed from an adult to a child model, as the adult model covered most of her face and was obviously designed for very large men.
Rachel is being encouraged to cough as much as possible to try to clear her lungs; so far this has not been sufficient and she has had to have a tube inserted via her nose to remove the accumulating gunk. Her condition is obviously being monitored but unless this improves she will need a trachy after all - this to give access to drain her lungs. We so hope this won't be necessary as it would probably mean that Rach would lose her new-found ability to speak to us.
We went to visit Rach tonight and the nurse advised us not to bother - Rach is worn out and needs to sleep. She's also got a higher temperature, which may mean a new infection, according to the nurse. It's been an up and down day - again!
So it's back to me today and to be totally honest I'm not the best with words, numbers are more my style so I thought I'd summarise the numbers for you all...
Time in hospital - 4 weeks
Operations in that time - 6
Number of ECMO centres in the country - 5
Number of ECMO beds in Manchester - 3
Was there one available when needed - Yes
Number of times Rach has beaten 50/50 odds - at least twice already
Chances of Rach avoiding Tracheotomy - 5%
Did Rach avoid it - Yes so far!
Number of infusions (different drugs) at the peak - 8
Number of infusions today - 1
(The infusions are on top of antibiotics and pain relief)
Amount of sedation being given now - 0
Number of doctors and nurses helping Rach move forward- We have had up to 12 doctors discussing her case on rounds; ensuring she has the best care.
We must have met more than 20 nurses just on the day shift, and she has had up to 2 nurses just for her care at times. Physio visits twice a day. I can't explain how these people have, almost without exception, been both incredibly skilled and caring.
Physio completed today - 100% (much improved after a difficult day yesterday when Rach refused physio)
Number of smiles today - many (to the great joy of the family!)
Number of words spoken - a few in a very small voice, a tiny whisper, but what a gift to hear them
Pride of big sister at the progress and determination of Rach - Infinite!
It has been a good day and Rach has been much more positive and determined once more which has been great to see. I know there is a long journey ahead but I like to remind myself of the numbers to see how far she has come to date.
Thank you again to everyone for your support and messages. If anyone is wanting to do something practical to help then please consider giving blood, apparently stocks are the lowest at this time of year. Rach has benefitted from a number of infusions already and I can't say how important it is. And if you can't for any reason, don't worry, just keep hoping and praying - I can't say how helpful that is too!
Seems very strange to be writing one of these after having awaited and read so many...
For those of you who don't know me, my name is Sammy and Rach is my best friend. (I won't claim I'm her's - she's far too popular for that!)
I've been given the privilege of updating the blog today - and I say privilege for a very good reason...
Rach was successfully extubated today! It seems that yesterday's 'definitely' was a real definitely and, this morning, out the tube came!
Rach's Mum and Dad said the anaesthetist was incredibly careful with her as they don't seem to extubate awake patients that often. She's managed so incredibly well with the breathing tube so hopefully now her hard work will pay off and she won't need a trachy.
She has remained off dialysis today too which is great. She probably will need to go back on but, as Lawson pointed out, the periods she's off are getting longer and longer so we can only hope that this is all heading in the right direction.
I got to spend a little bit of time with Rach today while she was awake and it was wonderful. She was obviously still tired and understandably uncomfortable but to get a little nod, shake, look of disapproval and, what may well have been a smile from her felt so special. As nice as it was to spend time with her when she was sleeping, nothing beats a look of disgust over the discussion of jazz from your best mate!
She's come so far but sitting in that room makes you realise how terribly far is still to go. She's doing so incredibly well though - i've never been prouder of her. I told her how many people were sending messages and thoughts and prayers and she nodded so we obviously need to continue!
Massive love and hugs to everyone, Sammy x
Hi all, going to pinch my dads dads update again today...
The doctors did another echo on Rachel's heart this morning and found that the improvement detected yesterday was not as significant as first thought; it's still better than nothing, but only worthy of half a glass of wine (half full, of course!) or a 20 second jig in the living room. The plan now is to give Rach up to another 7 weeks on the BIvad to see if the improvement continues sufficiently; then the decision on her future will have to be made (recovery, transplant, temporary internal pump leading to recovery or transplant - all still options). So we will have to 'hurry up and wait' some more.
On the more positive side, Rach has been breathing really well and is almost at the point of managing unassisted; when she's conscious she is outperforming her parents, it's just when she's asleep that her breathing becomes very shallow. This afternoon, though, she slept and breathed well simultaneously - I know, women can multitask better than men - the Prof says that they will definitely extubate her tomorrow (we've found that 'definitely' is a synonym which civil servants would love, meaning 'if all goes well and there are no further complications then possibly, but don't hold me to it')
We just saw Rach and she is very sleepy still. I find it so hard to see her struggling along so uncomplainingly with all the tubes and tiredness - and then have to tell her 'just another day, sweetheart' when I don't even believe it myself. I think she's a little down today - when we asked her if she'd like a friend to visit she just shrugged, as much as to say 'I don't care' then closed her eyes again. The Bible says that 'hope deferred makes the heart sick' - I really pray that there will be progress and that she will cope without the tube tomorrow.
I don't want to give the idea that we're all doom and gloom today - far from it - the overall trend continues to be positive; it's just that over time we are dealing with daily disappointments and daily joys, if you're praying for us you should know the reality of the downs as well as the ups.
As Pollyanna said, 'tomorrow is a new day' - we pray that you will have a good one!
Rach is still doing well and breathing fine on the ventilator. She had a good spell on the drager (stepping stone machine to extubation) and wasn't too tired which is great.
We've not had the full story on this but we understand that having looked at the echo results, the doctors think the left side of her heart may have improved. Until we speak with them properly, it's hard to know by how much or whether this is too early to tell but it's exciting news nonetheless.
I'm slowly explaining what's happened to her so that it doesn't come as one huge shock. At this stage we're not going into uneccessary detail but reiterating that she's been in hospital for a long time, that her heart needs to rest and that she's doing extremely well.
She was gesturing earlier when I was with her which was difficult as I couldn't grasp what she was trying to say. This was frustrating but it warmed my heart when we both gave up and she smiled and rolled her eyes. It's so nice to be able to interact more with her.
I can't believe I forgot the important news from yesterday - Professor Yonan (he's a big cheese) was explaining what was happening with her care to Rach and managed to elicit a big smile from her. It was lovely to see. He's a great guy and takes the time to talk to her on rounds as well as discussing her case with the other doctors.
Today has been a quiet day which we are learning is a good day in intensive care. Because the kidney machine was only put back on yesterday evening it needed more time to work so nothing much has been changed today - including no trachy. Good stuff.
Tomorrow the plan is to put Rach back on the Drager and see how she her breathing goes. She is much more awake again now and nodding and shaking her head to questions which is nice. Hopefully that will continue, although it would be lovely if the tube did disappear as she wants to be asking questions more as she wakes up.
Again, thank you for all your messages and for all the support. I keep telling Rach about it in her more awake moments and am sure it helps.
Just a quick update for today. In the end they have left rach without a trachy for today and there is still talk of possible removal of the tube. I think we are learning that you never really know what is happening until it happens as the situation is continually being assessed.
Infection markers are down and the kidney machine returns tonight. The return of the kidney machine will hopefully help remove the lingering sedation in her system as she is still very drowsy.
Basically a good day and hoping for more tomorrow.
We started out the day waiting for the senior doctors to assess Rach's breathing. They did a series of tests and decided that as she was tolerating the tube they would try taking her off the ventilator, but keeping the tube in and switching to something called a Drager. This gives less support than the ventilator and allowed them to see how she might manage if they did extubate. She managed 10 hours on the Drager but became very tired and so is back on the ventilator for the night. She is trying so hard but it is now likely that a tracheotomy will be required so that a more gradual process of weaning off the ventilator can be done. She has been on a ventilator for 3 weeks so it would have been a long shot to come straight off it. The tracheotomy will mean that she cannot talk, to start with at least, but we might be able to communicate if we can develop our lip reading skills. She will likely have a dry mouth and will have to work to strengthen her swallow to build up to eating or drinking.
She is still off the kidney machine but it will likely reappear as her levels are still not quite right. Her infection markers have come down a little and her chest xray is slightly improved which is a step in the right direction.
She is more alert and movement is returning. The nurses could hardly turn her neck a few days ago as it was so stiff and today she is able to move it a little on her own.
Honestly though, for all it has essentially been a good day, I have found the trachy news a bit of a blow. Lawson described it as cruel that she should have worked so hard today and still have another challenge to face. I wish we could do some of the work for her, and I wish I could protect her from the explanation we will have to give her as she awakens. She is my little sister and I know she is tough and strong and can do this... but I wish she didn't have to.
Tomorrow is a new day and I will start over and walk into her room with a smile and try and be as strong as she is being though. Can't have the little sister outdoing the big one!
Rach has had a good day - I think the nurses are very pleased with her. It's been nice that the nurses looking after her the last couple of days also looked after her near the start of her stay. They both seemed as happy with her progress as we are which is encouraging.
The kidney machine is off again at the moment. We'd love to say a permanent goodbye to it but we will have to see how she gets on. She produced plenty of wee the last time but not quite the right quality. Hopefully this time we will see quality and quantity (...and yes I can't believe I am still going on about wee).
Her drugs have been reduced considerably, no sedation now and just pain relief and antibiotics remain. She has been asleep a lot today but seems to be resting easy, and it is a comfort to me that the nurses can ask her now if she is in pain and act accordingly if required.
The plan at the moment is to remove the breathing tube tomorrow. There is no guarantee that this will work, often they just go straight to a tracheotomy and wean the patient slowly off the ventilator using that. It is a good sign that they want to try removing it with Rach and see how she does on her own. Again youth is on her side; she is responding to instructions and needs little support from the ventilator currently which is good. We will just have to wait and hope it is successful, and know that although we don't love Plan B (tracheotomy), it is still a good plan and would be progress.
Please continue to pray and hope for all the the same things, kidneys, infection, heart and now also for a successful removal of intubation. She has stayed remarkably calm the last few days, please also keep praying for the calm to continue as that will help her with her next challenges considerably. I am so proud of how she is coping with everything, her only complaint has been my choice of radio station - all 6 I tried were met with grimaces - I must try harder!!
We have all had a restful day, knowing she is peaceful and have had some fresh air. Hopefully this will put us in good stead to support her through whatever tomorrow brings.
As always, thank you for everyone's support, we are consistently amazed and strengthened by it.
Rach is more awake everyday as the sedation has now been removed which for us is amazing as we get to see the Rach we know coming back.
If Rachel strongly dislikes two things it's the Gilles Peterson radio show and jazz music. I say this because we've got a little dab radio positioned by her bedside to give her something to listen to other than beeps and whirrs and as I tuned it to radio 6, it fell upon the Gilles Peterson radio show playing jazz. I was genuinely thrilled that her response was to shake her head and frown! This is who I love.
That said, she is still very drowsy and unaware fully of what's happened. We still have this challenge to face.
Her infection markers are pretty unchanged for now but certainly now worse and she's tolerating the breathing tube well which bodes well for avoiding the need for a tracheostomy.
She's receiving lots of physio as she's not moved in almost three weeks. Because of this, she may need splints but this is not a concern, more part of her aftercare.
Her heart function and whether this will recover is yet unknown. Waking her up does allow the doctors to gauge this more effectively as well as assessing her for other treatment options such as an implant or transplant if necessary.
Otherwise, everything is nice and stable which is excellent. She's come a very long way in the past three weeks and you can see a fight in her. She looks confused but determined and still so beautiful.
Vicki mentioned there are over 160 people following her journal and wishing her well. That is absolutely tremendous and I'm sure that Rach looks forward to bringing positivity, prayers and help to anyone she can share experiences with as soon as she's able to.
Im going to pinch my dads update again for today...
Another topsy-turvy, emotionally-challenging day... it's becoming the norm for us. Rachel is starting to emerge from her long sleep and has opened her eyes today; her eyes followed a nurse round the room; she was able to give a little nod 'yes' and shake her head for 'no' and responded to simple instructions like 'please stop biting' - this after she had bitten the nurse trying to adjust her breathing tubes. She isn't anywhere near full consciousness and won't remember any of these experiences, but she's looking more like our adorably grumpy daughter again.
And she has lots of reasons for grumpiness; in some way she is aware of the various things the nurses and physio are doing and registers pain and discomfort - so her challenge is in many ways just beginning. We have such a mixture of feelings about this - so glad to see her as herself instead of the ethereal, angelic creature she has been under sedation - our stomachs churning with every uncomfortable treatment - cheering Rach on as she tackles such big obstacles - longing for her to rest - wanting her to receive love and healing - trying not to think too far ahead (ie to tomorrow).
Rach has coped without the kidney machine all day today and has had some kidney function, but her potassium levels have risen again and she will go back on the machine tonight (just for the night probably). Her level of infection has increased and a new cocktail of antibiotics is being tried - horrible for us to think of her coping with pneumonia as well as all the other issues.
In general the trend is positive; but I wanted to share a little of our rollercoaster to encourage you to keep praying for us. We have been so touched by the letters and emails you have sent, they have been the bright spots in otherwise rather dark days; thank you so much for sharing this journey with us.