So now it is June and still Daisy has not had her ileostomy surgery...we did have a near miss last Wednesday when I received a call while out shopping to say that a theatre slot had been found and her surgeon, Mr Curry, had freed up some time for Friday to perform the surgery - however there was one crucial link missing, a high dependency bed for Daisy...One look at her complicated medical history and the surgical ward decided not to take her and there was no room at the inn on Rainforest, the only ward she can feasibly go to. So we are back to square one, waiting, waiting and more waiting. Lots of liaising is going on between administrators and ward sisters but everyone who knows Daisy knows she does not do things according to plan things are more complicated that another average child, add into that a very busy surgeon and we are now looking at sometime towards the end of July I was told today. Bang goes our summer, but I guess it means that hopefully (fingers and toes crossed) Daisy will be stable enough to go back to school in September.
We continue in the meantime to live our lives on a knife edge, unable to plan, or enjoy any plans we do dare to make in case they get changed. This is a busy time of the year for us, both Theo and Xanthe have parts in school plays, there are various end of school parties and celebrations for Xanthe, school uniform to be bought for new schools, sports days, Jules' first holy communion....and the big event for Xanthe and I, our plan to go to Glastonbury. My hope is that if we get another short notice call for the surgery like last week it will be at least two weeks before Glastonbury with the hope that by then Daisy will be stable enough for me to go away for a couple of nights while Andy stays with her, otherwise I hope the date comes as soon as we get back from Glastonbury hopefully meaning that by the time of the school play performances and end of year school shennanigans Daisy will have transferred back to the local hospital...but then who knows? We continue as always to try and make plans, in fact we make things up was we go along and seize the moment . Now that we are getting more sunny days I relish those special times when we can have a barbeque or go out for a few hours - we all savour them as moments to remember when we are back in a hospital room, staring at the walls. I think over the past couple of years Andy and I have definitely mellowed, we used to resent the constant change of plan and the unpredictable nature of our life with Daisy, now we have learned that the only certain thing is the unpredictable element of our life. We always have a contingency plan, we have become experts at juggling things and rearranging at the last minute, all mainly so that the rest of the children have a chance of some fun, the ones that suffer are us, the parents, but even then Andy and I have found that we have to savour the small stuff and focus on what we have, not what we don't have. We are both avid facebookers and use this to keep in touch with family and friends and eachother, we find humour in the blackest moments and we constantly try to make sure we have some time together whenever possible. This time last year Andy had been made newly redundant, the future was uncertain and Daisy was still long term in hospital. There were some hairy points in the year with work and finances but now at last it is all coming home to roost, self employment suits our life well, Andy can be more flexible with his hours which means he can be around more for the children when Daisy is taken into hospital, and this has lead to lesss stress all around.
We also have a great new carer for Daisy who comes to help after school some of the week, while she cannot do any of the medical stuff it is great having another pair of hands around and she can also help with the older children. We are in a better position than we were this time last year, not in terms of Daisy's health, but in terms of the support we have put in place to help us cope with challenges. So now to Daisy's health....it's been three weeks since she was discharged from hospital following her last drama, and now we are back in again, this time for a two week intensive rehabilitation stay under the rheumatology team at GOS. This is a different sort of stay and, if hospital ever can be, quite enjoyable. Everything is focussed on building up Daisy's wasted muscles and helping her cope with her hypermobility which, while a feature of Costello Syndrome, is very extreme in Daisy's case (well no suprises there). It is very intense for her and as we are staying in the Patient Hotel and not a ward it is intense for me staying with her as there is no nursing help at all, however already we are seeing the benefits and she is becoming stronger and more confident on her feet. Even though the ileostomy surgery will set her back she will have a good foundation for her recovery and her muscles will remember what they are supposed to do (I hope).
In the three weeks between stays we have made some progress with the management of Daisy's pain. This is still the biggest issue in her and our lives. Every single night she wakes with pain in her tummy and every single night we have to give her a maximum dose of calpol. It is ridiculous that she went from IV ketamine infusions, boluses, IV Paracetamol and Oramorph while in hospital to calpol via a non-working gut....however we have had a bit of a breakthrough, thanks once again to our wonderful hospice, Chase. Chase have employed a Palliative Care consultant as a shared role with the Royal Marsden Hospital, I met with her last week to discuss Daisy and her pain management - in fact the more palatable title for palliative care with children is symptom managment, which is exactly what we need. She has put together a pain management plan for Daisy for when she is at home, at the local hospital and at GOS. In the next week Daisy will start on a drug called Gabapentin, while it is used for lots of different purposes one of the side effects is to help manage neuropathic pain, which is the pain Daisy experiences from the incorrectly functioning nerves in her gut. This in turn may help her sleep better which may help her cope better with the pain. As I posted on my facebook page, you shouldn't be happy about meeting with a doctor who cannot cure your child, but I was over the moon, at last someone who understood the issue and impact of Daisys pain and managing it. Even if the Gabapentin doesn't work there are a whole other range of drugs we can try so I feel that we are no longer limited and alone. Ultimately we hope the ileostomy will help but taking the non-functioning colon out of operation but no-one really knows if this will work until we try. So in the meantime we will continue to muddle along, waiting for the surgery date, hoping it doesn't have too big an impact on family plans and keeping everything crossed the surgery goes well and with the desired effect. Maybe by the time of my next update we will have that elusive date - here's hoping!
3 June 2010
8 May 2010
Dressed as Peter Pan during the celebrations for Peter Pan week at Great Ormond Street
Beautiful raspberry pink casts, her nails have now been painted to match by big sister
Listening to a professional storyteller who visited the ward, she got 3 stories out of him and did not want him to go!
Before going into hospital, looking at a lovely gift sent to her with her big sister
4 May 2010
Well guess where we are? Yes that’s right – still in hospital!!! In fact as I write we are on our home ward at Great Ormond Street Hospital – Rainforest. I always knew things would not be straightforward with Daisy’s orthopaedic surgery or TPN review, which was probably the reason why I had contacted our local hospital the week before to forewarn them of a possible transfer at the end of our booked week at GOS and also the reason why I had booked Daisy into the hospice for a few nights stay the following week. What I had not anticipated was Daisy being too unwell to actually leave GOS and needing a transfer to one of the high dependency beds on Rainforest!
The orthopaedic surgery itself went according to plan, a registrar drew two arrows on her legs so that the surgeons would know they were doing bilateral tendon lengthening and then he thought it would also be wise to draw arrows pointing to her ears so that the ENT surgeons would know where to put her grommets (hearing tubes) – I thought this was funny as it would be a bit worrying if an ENT surgeon did not know that grommets go in the ears. Annoyingly the arrows were drawn in indelible ink and Daisy spent the next week with them on her face and receiving puzzled looks from various medical staff..
She returned from theatre in her usual state – screaming and thrashing around. I always see other children in recovery sitting up taking things in but Daisy has a really bad response to anaesthetic and gets very upset afterwards. She had some respiratory distress for a couple of hours then flared up in a huge allergic rash requiring IV hydrocortisone – this is the second anaesthetic this has happened so the team are starting to get a bit twitchy about what to give her. She was clearly in some pain and we started her on IV paracetomol. The pain did not seem to come from her legs (which were now wrapped in lovely raspberry pink fibreglass casts) but from her tummy. As it worsened the night doctor started morphine into the mix. She transferred to the short stay ward the next day to start her TPN review and spent a morning in nuclear medicine having various tests and scans. By the afternoon the pain was getting worse and eventually she then spiked a 41.5degree fever and began vomiting copious amounts of bile indicating her tummy had shut down (we had only restarted minimal feeds anyway). We did blood cultures and started her antibiotic protocol assuming line infection. Her pain was becoming worse and worse and the pain management team decided to start her on a continuous ketamine infusion . To cut a long story short she needed the ketamine to be turned up more and more and she basically had 5 long nights without sleep and in considerable pain until it was controlled.
I was so please that she was transferred to Rainforest where she is so well known and where we could develop a plan for what to do next. Daisy’s pain at night has been increasing over the past few months and as you know we keep bouncing back and fore to A&E as she spikes temperatures requiring IV antibiotics. So far none of these episodes have been caused by a line infection and I was surprised that once again this was the case with this episode. This has left the doctors scratching their heads as they try and find out why Daisy is getting so many temperatures and why she is in so much pain at night. In a way it is good that she has done all of this here; for a start at our local there is no way that she could have received the level of pain relief offered here and she would have had to be retrieved to a more high dependency setting – wherever a bed was available which probably would not have been GOS. Also, we have been struggling to manage Daisy’s pain and these episodes of fever for a few months now and sometimes you feel like you’re a broken record telling the doctors about it. Without seeing it for themselves we have been told over and over it’s a UTI or winter bugs but thank goodness the doctors now can see the reality of what we have been telling them and agree there is a lot more going on.
The main decision is that an ileostomy is now absolutely essential,. No-one knows if it will work but at least the logic of reducing the length of passage of food in a very dismotile gut makes a lot of sense. So, having recently left a message for our surgeon saying we would like to go ahead but preferably at the end of our summer things are once again out of our control and the team here have been in touch with him to ask for it sooner rather than later....so much for the comment that the timing of the surgery was the one thing we had control over in my last post!. This has sent me into a real quandary as once again timings and plans are taken out of our hands. Now I hope that we get the date within the next couple of weeks – this would mean that hopefully by mid June Daisy would be well enough to be transferred to our local and be closer to home, mainly for Jules’ holy communion day. Later in the month or the beginning of June and we are in the danger zone, not only for things planned in June (including Xanthe & my much planned and talked about once in a lifetime very special trip to the Glastonbury Festival…..don’t even get me started on that one…) but also that Daisy will still be very much in hospital by the time the children break up for the long summer holidays meaning another summer spent juggling their needs with Daisy being in hospital.
I know how much Theo was affected by Daisy being in hospital for the entire first year of his new High School and we are experiencing set backs from this again now. Xanthe starts her new High School in September and I just want to be there for her as she makes the transition from Primary to High School. In a way Xanthe is in a better position, being a typical girl she has a lovely group of friends who support her and who she can talk to, she also uses her creative talents in art and writing to express how she feels and at the end of the day she was only five when Daisy was born and can hardly remember a time when hospitals were not part of our lives. The boys find it harder to express themselves, Jules loves Daisy completely and utterly, he worries about her when she is not at home and he needs his family to be together and Theo, who is now a teenager, veers from mature and sensible to completely exasperating. For Andy and I it is difficult to know if his behaviour is just normal teenager stuff or his way of dealing with his worries – my guess is it’s half and half.
And Andy and I struggle to find time for eachother like so many other parents of chronically ill children. Having been made redundant last year, Andy is building a very successful business that needs all his time. We spread ourselves thinly but both appreciate the importance of making time for eachother. We still find time to have a laugh and find humour in our situation, we are so fortunate that we had a good, solid relationship to start off with but it has been tested over and over in the past few years.
My biggest worry is that we are not moving forwards. Simple orthopaedic surgery has set Daisy back, her walking ability is worsening, normally children in casts after this operation are walking within a few days. Two weeks in and she can just about find the strength the weight bear for a few seconds. The dependency on TPN is increasing and her ability to tolerate enteral feeds is decreasing. The one area where she continues to progress is in her cognitive development, she is as bright as a button and signs constantly and often supports her signs with clear words. She has clear likes and dislikes, understands everything and when she is not in pain is so happy and contented.
I just hope we get a date for this ileostomy surgery very soon so that we can give it a try and Andy and I can be trained on yet another aspect of her care….clearly we missed our calling when we opted for careers in business, we were obviously meant to be nurses…
The orthopaedic surgery itself went according to plan, a registrar drew two arrows on her legs so that the surgeons would know they were doing bilateral tendon lengthening and then he thought it would also be wise to draw arrows pointing to her ears so that the ENT surgeons would know where to put her grommets (hearing tubes) – I thought this was funny as it would be a bit worrying if an ENT surgeon did not know that grommets go in the ears. Annoyingly the arrows were drawn in indelible ink and Daisy spent the next week with them on her face and receiving puzzled looks from various medical staff..
She returned from theatre in her usual state – screaming and thrashing around. I always see other children in recovery sitting up taking things in but Daisy has a really bad response to anaesthetic and gets very upset afterwards. She had some respiratory distress for a couple of hours then flared up in a huge allergic rash requiring IV hydrocortisone – this is the second anaesthetic this has happened so the team are starting to get a bit twitchy about what to give her. She was clearly in some pain and we started her on IV paracetomol. The pain did not seem to come from her legs (which were now wrapped in lovely raspberry pink fibreglass casts) but from her tummy. As it worsened the night doctor started morphine into the mix. She transferred to the short stay ward the next day to start her TPN review and spent a morning in nuclear medicine having various tests and scans. By the afternoon the pain was getting worse and eventually she then spiked a 41.5degree fever and began vomiting copious amounts of bile indicating her tummy had shut down (we had only restarted minimal feeds anyway). We did blood cultures and started her antibiotic protocol assuming line infection. Her pain was becoming worse and worse and the pain management team decided to start her on a continuous ketamine infusion . To cut a long story short she needed the ketamine to be turned up more and more and she basically had 5 long nights without sleep and in considerable pain until it was controlled.
I was so please that she was transferred to Rainforest where she is so well known and where we could develop a plan for what to do next. Daisy’s pain at night has been increasing over the past few months and as you know we keep bouncing back and fore to A&E as she spikes temperatures requiring IV antibiotics. So far none of these episodes have been caused by a line infection and I was surprised that once again this was the case with this episode. This has left the doctors scratching their heads as they try and find out why Daisy is getting so many temperatures and why she is in so much pain at night. In a way it is good that she has done all of this here; for a start at our local there is no way that she could have received the level of pain relief offered here and she would have had to be retrieved to a more high dependency setting – wherever a bed was available which probably would not have been GOS. Also, we have been struggling to manage Daisy’s pain and these episodes of fever for a few months now and sometimes you feel like you’re a broken record telling the doctors about it. Without seeing it for themselves we have been told over and over it’s a UTI or winter bugs but thank goodness the doctors now can see the reality of what we have been telling them and agree there is a lot more going on.
The main decision is that an ileostomy is now absolutely essential,. No-one knows if it will work but at least the logic of reducing the length of passage of food in a very dismotile gut makes a lot of sense. So, having recently left a message for our surgeon saying we would like to go ahead but preferably at the end of our summer things are once again out of our control and the team here have been in touch with him to ask for it sooner rather than later....so much for the comment that the timing of the surgery was the one thing we had control over in my last post!. This has sent me into a real quandary as once again timings and plans are taken out of our hands. Now I hope that we get the date within the next couple of weeks – this would mean that hopefully by mid June Daisy would be well enough to be transferred to our local and be closer to home, mainly for Jules’ holy communion day. Later in the month or the beginning of June and we are in the danger zone, not only for things planned in June (including Xanthe & my much planned and talked about once in a lifetime very special trip to the Glastonbury Festival…..don’t even get me started on that one…) but also that Daisy will still be very much in hospital by the time the children break up for the long summer holidays meaning another summer spent juggling their needs with Daisy being in hospital.
I know how much Theo was affected by Daisy being in hospital for the entire first year of his new High School and we are experiencing set backs from this again now. Xanthe starts her new High School in September and I just want to be there for her as she makes the transition from Primary to High School. In a way Xanthe is in a better position, being a typical girl she has a lovely group of friends who support her and who she can talk to, she also uses her creative talents in art and writing to express how she feels and at the end of the day she was only five when Daisy was born and can hardly remember a time when hospitals were not part of our lives. The boys find it harder to express themselves, Jules loves Daisy completely and utterly, he worries about her when she is not at home and he needs his family to be together and Theo, who is now a teenager, veers from mature and sensible to completely exasperating. For Andy and I it is difficult to know if his behaviour is just normal teenager stuff or his way of dealing with his worries – my guess is it’s half and half.
And Andy and I struggle to find time for eachother like so many other parents of chronically ill children. Having been made redundant last year, Andy is building a very successful business that needs all his time. We spread ourselves thinly but both appreciate the importance of making time for eachother. We still find time to have a laugh and find humour in our situation, we are so fortunate that we had a good, solid relationship to start off with but it has been tested over and over in the past few years.
My biggest worry is that we are not moving forwards. Simple orthopaedic surgery has set Daisy back, her walking ability is worsening, normally children in casts after this operation are walking within a few days. Two weeks in and she can just about find the strength the weight bear for a few seconds. The dependency on TPN is increasing and her ability to tolerate enteral feeds is decreasing. The one area where she continues to progress is in her cognitive development, she is as bright as a button and signs constantly and often supports her signs with clear words. She has clear likes and dislikes, understands everything and when she is not in pain is so happy and contented.
I just hope we get a date for this ileostomy surgery very soon so that we can give it a try and Andy and I can be trained on yet another aspect of her care….clearly we missed our calling when we opted for careers in business, we were obviously meant to be nurses…
17 April 2010
After much soul searching and wishing we could see into the future, Andy and I decided that it was inevitable that the ileostomy is going to happen but the thing we have control over is when. Our wish, after five years spent in and out of hospital and Daisy's deterioration in the past two years, is that we just have some time together as a family. So we have contacted the surgeon and asked for the ileostomy surgery to be scheduled for early autumn as opposed to early summer which was the orginal timescale. At least this way we can manage the risk of Daisy spending all summer in hospital and at least (hopefully ) keep hospital stays a bit shorter.
I was very excited to get a phonecall from the orthopaedics team offering us a cancelled date for Daisy's foot surgery. However like a London bus, you wait and wait and suddenly they all come at once - the date offered was the same as the week of tests and procedures planned by the gastro and endocrine teams. However I am so impressed by the fantastic Great Ormond Street Clinical Nurse specialists who have been pulling together and liaising so that hopefully Daisy can have her foot surgery (and some new grommets inserted into her ear canals). On Monday morning I will drive up to Great Ormond Street for 7.30am and Daisy will have her surgery that day, after a night on the orthopaedic ward she will transfer to the gastro ward then have all her TPN and gastro investigations including another general anaesthetic on Thursday when she will have an upper an lower endoscopy. The ward closes on Friday (can you believe this, GOS has some wards which are only open on weekdays even though they take the sickest of the sick) so I am assuming they will not be able to transfer her over to Rainforest ward and have prewarned our local hospital to expect a possible (or probable) transfer - two anaesthetics, orthopaedic surgery and whatever they find when doing their procedures and investigations....I just don't want to take too many risks. We have also booked Daisy into Chase for a respite stay starting on Sunday evening...
I really hope Daisy gets to go to Chase after her hospital stay, for a start managing a child with both legs in plaster who has wasted muscles and vestibular (balance) problems is enough in itself but add into that the pumps and TPN and then the fact that still not a night goes by without the need for pain relief and you can understand why sometimes we need a break....even though going to Chase is sometimes not a break as I wait for the call in the middle of the night that has so often come to say she has spiked a temperature signalling yet another infection.
Jules is now exactly the same age that Theo was when Daisy was born, I look at him and wonder, how did we manage? She was born prematurely and by caesarean (my first c-section out of four deliveries) 3 days before Christmas - the other children were 7, 5 and 2 and I had already spent 3 weeks in hospital beforehand. We were apart for Christmas that year, Andy was at home with the children, I was in hospital recovering and Daisy was in intensive care. Yes things have improved - over the past month we have lost a member of our Costello Syndrome family suddenly and unexpectedly and five children who are also supported by the Postpals Charity have lost their battles, at least Daisy is still with us and fighting. But - much as we were relieved to have been given a diagnosis for Daisy so early on, what has this really meant? No other child with Costello Syndrome has the extreme intestinal problems Daisy has, no-one else manages TPN at home - one or two have been on TPN in hospital when their child was being treated for Cancer or was very ill but normally with this syndrome children are starting to lose their dependency on tubes and starting to eat orally by this age, or at least to be able to take feed into their tummys....Daisy is completely TPN dependent, she still only gets the equivalent of 3 teaspoons an hour of feed into her jejenum for 10 hours a day. We cannot use her stomach as it does not empty properly and the milk would just build up and build up until she was sick. Every single night she screams with pain, I will not be suprised to be told that her gut is inflammed again next week when she is scoped, I don't know of another child with Costello Syndrome who battles with inflammatory bowel disease and has to receive immunosuppressant therapy. And then the children I know with these sort of gut issues don't have the Costello issues - they are cognitively able, they do not have severe visual impairments, they do not have to be screened every few months to check for malignancies, their parents do not have to worry that tight heel cords mean that their spinal cord has tethered or a chiaria malformation has formed necessitating brain surgery.....Some days it is very lonely in this world and I cannot help but feel sorry for myself, every single day we disconnect TPN, we flush her line, we lock the line with drugs aimed at preventing infection, we deliver her meds into her jejenum - no nasty tasting meds into the mouth for Daisy, we make up the milk mixing in complex carboydrate powder to make sure her blood sugar does not drop, set up her enteral pump, we remember to get the new bag of TPN out of the fridge to come to room temperature, prepare her IV trolley, connect her up to the TPN, give her more meds, inject her with growth hormone to make sure her blood sugars remain stable, untangle her from her TPN lines when she thrashes around at night.......day in, day out. And each day we are rewarded by her progress, little steps, more and more words, a new obsession with Thomas the Tank Engine, a cuddle for her brother when he was feeling ill, asking to have her toe nails painted.....and this is why we are doing it, Daisy is not a syndrome or a patient or a set of symptoms, she's just another of our children, maybe a bit more complex and time consuming, but a five year old girl who keeps defying the odds and suprising us with her abilities. I have never compared her with other "typical" children of her age and I must remind myself that while she has a diagnosis, that only serves to get her the help she needs, that label still does not lay out the path of what she will or will not do, having Daisy in our lives is rewarding and wonderful and she is one of four unique, sometimes exasperating, children and that is what matters most.
Roll on Monday...........
I was very excited to get a phonecall from the orthopaedics team offering us a cancelled date for Daisy's foot surgery. However like a London bus, you wait and wait and suddenly they all come at once - the date offered was the same as the week of tests and procedures planned by the gastro and endocrine teams. However I am so impressed by the fantastic Great Ormond Street Clinical Nurse specialists who have been pulling together and liaising so that hopefully Daisy can have her foot surgery (and some new grommets inserted into her ear canals). On Monday morning I will drive up to Great Ormond Street for 7.30am and Daisy will have her surgery that day, after a night on the orthopaedic ward she will transfer to the gastro ward then have all her TPN and gastro investigations including another general anaesthetic on Thursday when she will have an upper an lower endoscopy. The ward closes on Friday (can you believe this, GOS has some wards which are only open on weekdays even though they take the sickest of the sick) so I am assuming they will not be able to transfer her over to Rainforest ward and have prewarned our local hospital to expect a possible (or probable) transfer - two anaesthetics, orthopaedic surgery and whatever they find when doing their procedures and investigations....I just don't want to take too many risks. We have also booked Daisy into Chase for a respite stay starting on Sunday evening...
I really hope Daisy gets to go to Chase after her hospital stay, for a start managing a child with both legs in plaster who has wasted muscles and vestibular (balance) problems is enough in itself but add into that the pumps and TPN and then the fact that still not a night goes by without the need for pain relief and you can understand why sometimes we need a break....even though going to Chase is sometimes not a break as I wait for the call in the middle of the night that has so often come to say she has spiked a temperature signalling yet another infection.
Jules is now exactly the same age that Theo was when Daisy was born, I look at him and wonder, how did we manage? She was born prematurely and by caesarean (my first c-section out of four deliveries) 3 days before Christmas - the other children were 7, 5 and 2 and I had already spent 3 weeks in hospital beforehand. We were apart for Christmas that year, Andy was at home with the children, I was in hospital recovering and Daisy was in intensive care. Yes things have improved - over the past month we have lost a member of our Costello Syndrome family suddenly and unexpectedly and five children who are also supported by the Postpals Charity have lost their battles, at least Daisy is still with us and fighting. But - much as we were relieved to have been given a diagnosis for Daisy so early on, what has this really meant? No other child with Costello Syndrome has the extreme intestinal problems Daisy has, no-one else manages TPN at home - one or two have been on TPN in hospital when their child was being treated for Cancer or was very ill but normally with this syndrome children are starting to lose their dependency on tubes and starting to eat orally by this age, or at least to be able to take feed into their tummys....Daisy is completely TPN dependent, she still only gets the equivalent of 3 teaspoons an hour of feed into her jejenum for 10 hours a day. We cannot use her stomach as it does not empty properly and the milk would just build up and build up until she was sick. Every single night she screams with pain, I will not be suprised to be told that her gut is inflammed again next week when she is scoped, I don't know of another child with Costello Syndrome who battles with inflammatory bowel disease and has to receive immunosuppressant therapy. And then the children I know with these sort of gut issues don't have the Costello issues - they are cognitively able, they do not have severe visual impairments, they do not have to be screened every few months to check for malignancies, their parents do not have to worry that tight heel cords mean that their spinal cord has tethered or a chiaria malformation has formed necessitating brain surgery.....Some days it is very lonely in this world and I cannot help but feel sorry for myself, every single day we disconnect TPN, we flush her line, we lock the line with drugs aimed at preventing infection, we deliver her meds into her jejenum - no nasty tasting meds into the mouth for Daisy, we make up the milk mixing in complex carboydrate powder to make sure her blood sugar does not drop, set up her enteral pump, we remember to get the new bag of TPN out of the fridge to come to room temperature, prepare her IV trolley, connect her up to the TPN, give her more meds, inject her with growth hormone to make sure her blood sugars remain stable, untangle her from her TPN lines when she thrashes around at night.......day in, day out. And each day we are rewarded by her progress, little steps, more and more words, a new obsession with Thomas the Tank Engine, a cuddle for her brother when he was feeling ill, asking to have her toe nails painted.....and this is why we are doing it, Daisy is not a syndrome or a patient or a set of symptoms, she's just another of our children, maybe a bit more complex and time consuming, but a five year old girl who keeps defying the odds and suprising us with her abilities. I have never compared her with other "typical" children of her age and I must remind myself that while she has a diagnosis, that only serves to get her the help she needs, that label still does not lay out the path of what she will or will not do, having Daisy in our lives is rewarding and wonderful and she is one of four unique, sometimes exasperating, children and that is what matters most.
Roll on Monday...........
20 March 2010
So we are nearing the end of March and still our battles with Daisy go on. This year we have already racked up 5 hospital stays, and the fact that we can now do things like TPN and bloods at home have kept her out of hospital the rest of the time.
We are facing some big decisions and seeing Daisy deteriorating in many ways so our mantra continues to be "will it improve her quality of life".....
The ongoing issue remains infections, she is chronically unwell a lot of the time with low grade fevers and "pyrexia of unknown origin" - we know that the taurolock line locks we now use in her hickman line are helping protect the line from infection but the large doses of immunosuppressants she is on mean that she picks up every bug going and ontop of that bugs move from her not very well functioning gut into her blood stream causing her problems. This has been the main cause of her recent hospital admissions as any bug also causes her tummy to go into "pseudo-obstruction" and shut down - this is happening more and more and I have had times where I have considered only buying yellow pyjamas and bedsheets for her to match the bile that pours out of her tummy during these times..
One of our admissions was slightly more dramatic than normal and for the first time ever I called 999 for an ambulance when I discovered Daisy soaked in blood pouring from her hickman line - to this day we still do not know why it started to bleed suddenly but may be something to do with her high blood pressure issues.
We have had two meetings with Surgeons since my last post - after a couple of cancellations because Daisy was too unwell to attend the appointment we met with her Orthopaedic surgeon and have at last got the ball rolling to get her feet sorted, this can't come soon enough as Daisy has now gone from being able to walk around with her little backpack carrying her pump to not being unable to walk unaided and mainly shuffling on her knees to get around the house. The tightening of her achilles tendons is so severe that her big toe joint is now at a right angle to the rest of her foot when upright. She cannot wear shoes or her foot orthotics and has considerable pain in her hips if she spends too long on her feet. Once she has the surgery to lengthen and stretch her achilles tendons, which will be in about two months time because of the waiting list, she will need to be in casts for quite a few weeks, hopefully once everything has healed she will then need to go into hospital for a two week intensive rehabilitation stay as her muscles in her legs have wasted and essentially she will need to re-learn how to walk again. I am so frustrated by this situation as I have been saying to physiotherapists for years that tight heel cords can come on very very quickly in children with Costello Syndrome but, if we ever actually saw a physio which was not often, I was accused of worrying about things before they even happened. We have now reached a point where what would have been simple surgery has now become quite complicated with no guarantee of a complete success....
The other surgeon we have met with was one of the Paediatric Surgery Consultants at GOS, our lovely gastro consultant referred us to him to discuss surgery to form an ileostomy. This is where the bowel is brought out through the abdomen to form a stoma, bypassing the large colon. The pellet study of Daisy's intestinal transit showed that the radio-opaque pellets she had to swallow took at least 3 days to reach her intenstines and then she took a total of 19 days to pass them all.... confirming, that she has very poor intestinal motility, particularly in the lower part of her colon. The severe pan-colitis she also has, has probably affected the nerves and in a nutshell her gut, which didn't work properly from birth, has now deteriorated massively. The hope is that by performing an ileostomy we create a smaller area for the gut to work and bypass the areas we know are the most diseased and dysfunctional - possibly to allow them to heal and one day work properly... This may reduce Daisy's dependency on TPN and maybe even allow her to be fed into her stomach instead of into her jejenum...These are all the positives, the negatives are that it is major surgery and there are no guarantees except for the fact that she will get worse before she gets better and we may after all of it end up having to reverse the stoma and reconnecting the bowel if it does not make any difference...
This is a huge decision for Andy and I, we know we have to try and give Daisy the best chance but it's all the unknowns....and, if I am completely honest, with the memory of our recent 12 month stint still fresh the thought of another long marathon stay in hospital fills me with dread. The surgeon has left it to us to make the decision while booking the bed and the theatre slot anyway so that we do not have to delay if we decide to go ahead. It is such a big decision for us because Daisy is just not straightforward - she is classed as being risky for anaesthetic because of previous problems and because of her heart condition, her endocrine issues mean her blood sugar mangement will be even more tricky, her gut does not tolerate change will definitely go into shut down for a while and then there is the risk to her hickman line as she will have a hickman, gastrostomy, jejenostomy and ileostomy which are all possible sources and sites for infection....
However both Andy and I know we have to make a decision soon, Daisy's condition has deteriorated massively over the past two years and is definitely not getting better. The amount of feed she receives into her jejenum is paltry, the equivalent of 3 teaspoons an hour and most of that is made up of sugar just to maintain her blood sugars while off the TPN. She is TPN dependent and this is not conducive to a long life, her pan-colitis is poorly controlled - at the moment she has a flare up which has slowed her gut down and is causing her significant pain. The immunosuppressant therapy she is on to dampen down her body's response to the inflammation is difficult to manage as her gut does not absorb the drugs well and she cannot take them orally as she risks aspirating them. I have to take bloods weekly to measure her cyclosporin levels - too high and she risks kidney damage, too low and she will have a flare up of the inflammation. In a year she has not had a consistent run of her levels being where they should be. For all these reasons and for many more I know we must give the ileostomy a try, if I could see into the future it would be so easy, but then life with a child with Costello Syndrome was never meant to be easy....
My gut feeling (pun intended!) is that we will ask for the surgery to be pushed back to late summer to allow her to recover from the orthopaedic surgery which is essential to ensure she does not lose the ability to walk and allow us some family time over the summer. In the meantime Daisy is due a planned week long stay in GOS for a whole range of tests including another endoscopy/colonoscopy - perhaps the results will help tip the balance on how quickly we go ahead with the surgery...
Life at home still goes on - Daisy now has transport to take her to school and this has freed up so much time in my day. However she has not managed a full week at school, so much time is taken up with illness or hospital appointments. When she is there however she is at her happiest. She gets so excited when the bus arrives to collect her and her cognitive development continues to amaze everyone who works with her. The plan now is to move to "sign supported english" as she is starting to vocalise words more and more but will need the signing to get her point and meaning across. We all sign naturally with her and never have any trouble understand what she is trying to communicate.
Andy is still building his new business and work is picking up more and more, Theo is totally involved in his life at high school and Xanthe is over the moon having been offered a place at her first choice High School. Jules is busy preparing for his holy communion and we are all looking forward to that date as it is yet another excuse for a Nimmo Summer Garden Party...we continue to make plans, and tweak and change them to fit in with Daisy...this has become our life, living with uncertainty has become normality, we have learned not to fight it but to go with the flow, expecting the worst but sometimes being pleasantly suprised. Maybe it's not a textbook strategy but for us, it works....
12 January 2010
Every day my youngest daughter's capacity to overcome the odds that are stacked against her completely amaze me. Yesterday she had a dual sensory assesment at her school to look at the support she needs to take into account her visual and hearing impairments. In fact Daisy is multi-sensory impaired, all her senses are not wired like yours or mine so every day tasks take so much longer, she has to work twice, three times as hard as any other child just to do simple things like sit at a table and play with a toy. She has to remain balanced, focus her hearing and vision, explore using touch and taste and smell, all of these things she does with a system that does not function in the way it should. What we discovered, or rather confirmed that everyone in the room already knew, is that Daisy is a bright little cookie. There is so much going on in her brain, but she needs to be given the resources to help her use it. The biggest problem continues to be speech, which is limited, however, her communication (using signs) is coming on leaps and bounds - just because she does not speak it does not mean that she does not understand or need to tell you how she feels. One of the outcomes of yesterdays session was to really work on her signing, progressing hopefully to using British Sign Language. I hope that as she begins to use signing more and more this will equip her for later life and help her assert herself and get other people to understand that lack of speech does not mean that she does not have feelings and comments to make on what is happening to her.
Today Daisy wore her new bone conductor hearing aids to school - what a transformation, the teacher told me she has been so vocal, it's like a light bulb has gone on with her ability to hear more clearly...of course we are now waiting for the proper digital ones to arrive so that she can have even better sound quality...
Daisy started the new year in Rainforest Ward - just to make her mark that hospital life would continue, despite our wonderful birthday, Christmas, new year break....The stay was for a new hickman line, two repairs to her hickman line were too risky for infection so she was prioritised for a line change, removing one from the right jugular and placing a new one into the left jugular. Fortunately this was relatively straightforward inspite of the interventional radiologist (who has worked on Daisy before) commenting, yes I remember Daisy, she has very wiggly veins....don't you just love these doctores and their casual asides...
This year will see lots more hospital stays - the likelihood of an ileostomy to bypass Daisy's non-functioning colon is looking more and more strong. Tests that were conducted over Christmas seem to confirm this although we will get the official results when we meet with Daisy's main Gastroenterologist on Monday. This takes us into yet another new territory - another bit of plumbing to contend with and what essentially is very major surgery for a little girl with a lot going on. Our hope, if this is the route we go dow, is that this will put an end the awful pain that she is experiencing, mainly at night time.
This is not the only surgery she will have this year, we are still waiting for the date for the tendon releasing surgery - she now spends more time off her feet than on her feet and if this surgery is not done soon Daisy will be unable to walk. Following this surgery will be around 6 weeks in plaster casts - fun for all involved and then a two week intensive rehabilitation stay at GOS. The only good thing with all this surgery and hospital stays is that it is all planned, hopefully we will see less emergency admissions this year and instead have more planned stays focussing on improving Daisy's quality of life.
Today Daisy wore her new bone conductor hearing aids to school - what a transformation, the teacher told me she has been so vocal, it's like a light bulb has gone on with her ability to hear more clearly...of course we are now waiting for the proper digital ones to arrive so that she can have even better sound quality...
Daisy started the new year in Rainforest Ward - just to make her mark that hospital life would continue, despite our wonderful birthday, Christmas, new year break....The stay was for a new hickman line, two repairs to her hickman line were too risky for infection so she was prioritised for a line change, removing one from the right jugular and placing a new one into the left jugular. Fortunately this was relatively straightforward inspite of the interventional radiologist (who has worked on Daisy before) commenting, yes I remember Daisy, she has very wiggly veins....don't you just love these doctores and their casual asides...
This year will see lots more hospital stays - the likelihood of an ileostomy to bypass Daisy's non-functioning colon is looking more and more strong. Tests that were conducted over Christmas seem to confirm this although we will get the official results when we meet with Daisy's main Gastroenterologist on Monday. This takes us into yet another new territory - another bit of plumbing to contend with and what essentially is very major surgery for a little girl with a lot going on. Our hope, if this is the route we go dow, is that this will put an end the awful pain that she is experiencing, mainly at night time.
This is not the only surgery she will have this year, we are still waiting for the date for the tendon releasing surgery - she now spends more time off her feet than on her feet and if this surgery is not done soon Daisy will be unable to walk. Following this surgery will be around 6 weeks in plaster casts - fun for all involved and then a two week intensive rehabilitation stay at GOS. The only good thing with all this surgery and hospital stays is that it is all planned, hopefully we will see less emergency admissions this year and instead have more planned stays focussing on improving Daisy's quality of life.
24 December 2009
Well, after much cajoling by family and friends, I am back to blogging.... to be honest it has been difficult to fit in the time to write now that Daisy is at home, also, sometimes I feel like I am writing the same stuff over and over and maybe people don't want to read it but based on feedback when I stopped writing for a while it is obvious that a lot of you out there quite like my ramblings.
So here, instead of cards (do you think I have time to write Christmas cards???) - is my Christmas blog...........
Lots has happened (no suprises there) since my last post. two emergency hospital stays, lots of outpatient appointments, more surgery plans and continuing battles with bureaucracy. Lets start with the good news first however...
After the October half term our local education authority saw sense at last and agreed to fund a full time one to one support for Daisy so that she could attend school full time. The difference in Daisy has been amazing, she is more confident, vocal and her communication skills (using sign language) are truly fantastic. She ended the term being awarded the Principal's prize for excellent signing and also enjoyed playing an angel in her class assembly, sitting confidently and watching all the other children, joining in with all the songs and applause. School has been the making of Daisy and we are so grateful and happy that she has been able to attend this particular school, a specialist sensory school where the teachers are skilled in working with children with sensory impairments. The only downside is that although funding has now been approved for Daisy to be taken to school with the school transport service this has not yet happened (due to bureaucracy again) meaning Andy and I have to take her back and fore to school which takes up two hours of our day and a huge amount of juggling with the other children. I'm really hoping that this is resolved in the new year as the daily battles with other school run mums across Wimbledon are taking their toll and we are worried about the words Daisy is learning as we vent our frustrations on other mad drivers!!!
Another lovely thing that happened in November was Theo's confirmation. Some of you will know that I am a practising catholic and a confirmation is a really big rite of passage for a young person. It was such a lovely chance to be together as a family with the focus on one of the other children for a change. In catholicism you take a saints name at confirmation and Theo chose "John" which was my dad's name, particularly poignant as mum was his confirmation sponsor and dad's anniversary had been the week before . I know dad would have been so proud of all our children so it was so nice for Theo to honour his memory in this way...
Of course as always there have been the obligitary hospital visits both planned and emergency. We had a few trips to A&E in November as Daisy was experiencing really acute pain and screaming out, always in the back of our minds is the increased risk of malignancy that Costello Syndrome carries. It's so difficult taking Daisy to A&E now as staff change so frequently and it can be really frustrating going over and over things with new people. Theoretically she should have notes kept in A&E for what to do in an emergency - something that was agreed with the Great Ormond Street team on discharge - but we found on our visit there that the notes had not been updatede which made things very difficult. In addition it doesn't help that Daisy is so complex, some doctors can flounder a bit, particularly when faced with such knowledgeable parents. It took four visits before Daisy was admitted with a 40 degree temperature and quite poorly. As there were no cubicles at our local any more we had to be shipped to Epsom hospital which might as well have been Manchester as we had to start all over again with staff who did not know Daisy or us. They were however fantastic and Daisy was home after a week and then went to our wonderful hospice to recuperate...
A couple of weeks later her temperature shot up again, we always have to suspect line sepsis in this scenario and we had to rush again to A&E. This time she did get a cubicle at our local hospital so at least we were closer to home. This last stay in hospital highlighted some things to us which have changed so much since the days when Daisy was smaller and much, much less complicated (although we didn't think so at the time!!!). Daisy is the only child who normally is on the ward who is totally TPN dependent and a patient of Great Ormond Street. Part of the philosophy of the Home TPN programme at GOS is that in order to minimise infection risk only the parents should set up or take down the TPN or access the line for bloods. In theory this is fine but when you have a child like Daisy who never ever sleeps through the night and has lots of complications it puts a huge pressure on Andy and I, particularly when you add into the mix Andy trying to run and manage a business and three other children who are not allowed onto the ward because of swine flu precautions. We had agreed at a meeting at GOS that we would manage Daisy's TPN when in hospital but use a hospital pump provided by GOS, normally this works in every other hospital where their home TPN patients visit as the pump that was provided is a standard hospital one. Standard except in our local children's ward (even though it was in use in the rest of the hospital). So we had to cope with the scenario of nurses unwilling to use another hospital's pump, unwilling to put our TPN through their pump, sleep deprived parents who were having to stay awake for 18+ hours while also trying to juggle childcare and in Andy's case client work. Needless to say things were not good during Daisy's last hospital stay and while she recovered well we were disappointed that, without going into detail, we were seen as a problem. In five years we have got very close to the staff at our local hospital and I guess with the demands being put on us as parents of a medically fragile and complicated child our relationship with them has had to change as we have become more knowledgeable about Daisy's needs and she has become more complicated. Ultimately we would like to avoid any unplanned hospital stays and, now that Andy and I have been trained in lots of areas like giving TPN and IV medication hopefully emergency visits will be short and sweet.
However the planned visits are unavoidable and these all take place at Great Ormond Steet Hospital. Again since having time at home we have really come to appreciate how incredibly lucky we are to be able to have all of Daisy's specialist care at GOS. As she grows bigger other issues, more common in her syndrome, are starting to manifest. The one area which has crept up really quickly is Daisy's feet and general orthopaedic issues. Her achilles tendons are now so tight she walks in a permanent tiptoe and her leg splints are now causing her severe pain. She will have surgery in the new year to release her heel cords, followed by several weeks in plaster casts. After that is all over she will then be readmitted to hospital for extensive rehabilitation physiotherapy under the care of the rheumatology team as she has been found to have benign hypermobility syndrome complicated by fluctuating muscle tone (try saying that after a few drinks!) - the bottom line is that this causes her pain and puts things out of alignment which causes her even more pain and was probably responsible for the fluid on her hips during the summer.
We met with Daisy's Gastroenterologist a few weeks back and he now feels that the extreme inflammation she experienced with her inflammatory bowel disease has damaged her nerve ending in her gut which were not functioning properly, hence her dependency on TPN for her nutrition and her inability to manage more than 15mls/hour into her jejenum. Over Christmas we are faced with the fun task of trying to get Daisy to swallow four radio-marked pellets over four days to try and work out how slowly her gut moves - obviously if on x-ray the pellets show up in her lungs it will confirm that her swallow is still unsafe!!! We are then back in clinic in January to see if there are any further options for treatment, including, surgery, which may help her.
Despite everything, and even though she has kept us on our toes during the past few weeks Daisy managed to be well and stable for her birthday, for the first time ever she spent it out of hospital and hospice and we managed a short pre Christmas break to Center Parcs in Longleat. The Gods must have been smiling on us as considering we have not been further than our hospice in Guildford in the past 18 months Daisy was fit and strong and loved every minute of our time away, we avoided all the severe weather and the snow we had just made the forest seem even more magical than ever. I can hand on heart say it was the best birthday ever and whatever happens in 2010 the memories of happy family times in the run up to Christmas will sustain us all for a long long time.
Right - I need to get back to Christmas preparations, the presents are not going to wrap themselves. We have vigil mass in a couple of hours, Xanthe is playing an angel in the church nativity, Theo is altar serving and even Andy, the arch atheist, is coming to church (mainly to hear the choir sing a not-tongue in cheek version of Johnny Mathis' "When a Child is Born" - including the spoken bit in the middle....)
Hopefully this blog update will make up for the fact that I have not sent any Christmas cards, however to everyone who sent us cards and Daisy birthday cards, thank you so much - especially post pals who brighten our days!!!!
I'm going to post some pics later but in the meantime:
HAPPY CHRISTMAS AND A HEALTHY AND WEALTHY 2010
XXXXXXXX
useful links:
www.lindenlodge.wandsworth.sch.uk
www.postpals.co.uk
www.facebook.com/people/Stephanie-Nimmo/653854349
http://www.gosh.org/x-factor/the-charity-single/your-say/stephanie-nimmo/
So here, instead of cards (do you think I have time to write Christmas cards???) - is my Christmas blog...........
Lots has happened (no suprises there) since my last post. two emergency hospital stays, lots of outpatient appointments, more surgery plans and continuing battles with bureaucracy. Lets start with the good news first however...
After the October half term our local education authority saw sense at last and agreed to fund a full time one to one support for Daisy so that she could attend school full time. The difference in Daisy has been amazing, she is more confident, vocal and her communication skills (using sign language) are truly fantastic. She ended the term being awarded the Principal's prize for excellent signing and also enjoyed playing an angel in her class assembly, sitting confidently and watching all the other children, joining in with all the songs and applause. School has been the making of Daisy and we are so grateful and happy that she has been able to attend this particular school, a specialist sensory school where the teachers are skilled in working with children with sensory impairments. The only downside is that although funding has now been approved for Daisy to be taken to school with the school transport service this has not yet happened (due to bureaucracy again) meaning Andy and I have to take her back and fore to school which takes up two hours of our day and a huge amount of juggling with the other children. I'm really hoping that this is resolved in the new year as the daily battles with other school run mums across Wimbledon are taking their toll and we are worried about the words Daisy is learning as we vent our frustrations on other mad drivers!!!
Another lovely thing that happened in November was Theo's confirmation. Some of you will know that I am a practising catholic and a confirmation is a really big rite of passage for a young person. It was such a lovely chance to be together as a family with the focus on one of the other children for a change. In catholicism you take a saints name at confirmation and Theo chose "John" which was my dad's name, particularly poignant as mum was his confirmation sponsor and dad's anniversary had been the week before . I know dad would have been so proud of all our children so it was so nice for Theo to honour his memory in this way...
Of course as always there have been the obligitary hospital visits both planned and emergency. We had a few trips to A&E in November as Daisy was experiencing really acute pain and screaming out, always in the back of our minds is the increased risk of malignancy that Costello Syndrome carries. It's so difficult taking Daisy to A&E now as staff change so frequently and it can be really frustrating going over and over things with new people. Theoretically she should have notes kept in A&E for what to do in an emergency - something that was agreed with the Great Ormond Street team on discharge - but we found on our visit there that the notes had not been updatede which made things very difficult. In addition it doesn't help that Daisy is so complex, some doctors can flounder a bit, particularly when faced with such knowledgeable parents. It took four visits before Daisy was admitted with a 40 degree temperature and quite poorly. As there were no cubicles at our local any more we had to be shipped to Epsom hospital which might as well have been Manchester as we had to start all over again with staff who did not know Daisy or us. They were however fantastic and Daisy was home after a week and then went to our wonderful hospice to recuperate...
A couple of weeks later her temperature shot up again, we always have to suspect line sepsis in this scenario and we had to rush again to A&E. This time she did get a cubicle at our local hospital so at least we were closer to home. This last stay in hospital highlighted some things to us which have changed so much since the days when Daisy was smaller and much, much less complicated (although we didn't think so at the time!!!). Daisy is the only child who normally is on the ward who is totally TPN dependent and a patient of Great Ormond Street. Part of the philosophy of the Home TPN programme at GOS is that in order to minimise infection risk only the parents should set up or take down the TPN or access the line for bloods. In theory this is fine but when you have a child like Daisy who never ever sleeps through the night and has lots of complications it puts a huge pressure on Andy and I, particularly when you add into the mix Andy trying to run and manage a business and three other children who are not allowed onto the ward because of swine flu precautions. We had agreed at a meeting at GOS that we would manage Daisy's TPN when in hospital but use a hospital pump provided by GOS, normally this works in every other hospital where their home TPN patients visit as the pump that was provided is a standard hospital one. Standard except in our local children's ward (even though it was in use in the rest of the hospital). So we had to cope with the scenario of nurses unwilling to use another hospital's pump, unwilling to put our TPN through their pump, sleep deprived parents who were having to stay awake for 18+ hours while also trying to juggle childcare and in Andy's case client work. Needless to say things were not good during Daisy's last hospital stay and while she recovered well we were disappointed that, without going into detail, we were seen as a problem. In five years we have got very close to the staff at our local hospital and I guess with the demands being put on us as parents of a medically fragile and complicated child our relationship with them has had to change as we have become more knowledgeable about Daisy's needs and she has become more complicated. Ultimately we would like to avoid any unplanned hospital stays and, now that Andy and I have been trained in lots of areas like giving TPN and IV medication hopefully emergency visits will be short and sweet.
However the planned visits are unavoidable and these all take place at Great Ormond Steet Hospital. Again since having time at home we have really come to appreciate how incredibly lucky we are to be able to have all of Daisy's specialist care at GOS. As she grows bigger other issues, more common in her syndrome, are starting to manifest. The one area which has crept up really quickly is Daisy's feet and general orthopaedic issues. Her achilles tendons are now so tight she walks in a permanent tiptoe and her leg splints are now causing her severe pain. She will have surgery in the new year to release her heel cords, followed by several weeks in plaster casts. After that is all over she will then be readmitted to hospital for extensive rehabilitation physiotherapy under the care of the rheumatology team as she has been found to have benign hypermobility syndrome complicated by fluctuating muscle tone (try saying that after a few drinks!) - the bottom line is that this causes her pain and puts things out of alignment which causes her even more pain and was probably responsible for the fluid on her hips during the summer.
We met with Daisy's Gastroenterologist a few weeks back and he now feels that the extreme inflammation she experienced with her inflammatory bowel disease has damaged her nerve ending in her gut which were not functioning properly, hence her dependency on TPN for her nutrition and her inability to manage more than 15mls/hour into her jejenum. Over Christmas we are faced with the fun task of trying to get Daisy to swallow four radio-marked pellets over four days to try and work out how slowly her gut moves - obviously if on x-ray the pellets show up in her lungs it will confirm that her swallow is still unsafe!!! We are then back in clinic in January to see if there are any further options for treatment, including, surgery, which may help her.
Despite everything, and even though she has kept us on our toes during the past few weeks Daisy managed to be well and stable for her birthday, for the first time ever she spent it out of hospital and hospice and we managed a short pre Christmas break to Center Parcs in Longleat. The Gods must have been smiling on us as considering we have not been further than our hospice in Guildford in the past 18 months Daisy was fit and strong and loved every minute of our time away, we avoided all the severe weather and the snow we had just made the forest seem even more magical than ever. I can hand on heart say it was the best birthday ever and whatever happens in 2010 the memories of happy family times in the run up to Christmas will sustain us all for a long long time.
Right - I need to get back to Christmas preparations, the presents are not going to wrap themselves. We have vigil mass in a couple of hours, Xanthe is playing an angel in the church nativity, Theo is altar serving and even Andy, the arch atheist, is coming to church (mainly to hear the choir sing a not-tongue in cheek version of Johnny Mathis' "When a Child is Born" - including the spoken bit in the middle....)
Hopefully this blog update will make up for the fact that I have not sent any Christmas cards, however to everyone who sent us cards and Daisy birthday cards, thank you so much - especially post pals who brighten our days!!!!
I'm going to post some pics later but in the meantime:
HAPPY CHRISTMAS AND A HEALTHY AND WEALTHY 2010
XXXXXXXX
useful links:
www.lindenlodge.wandsworth.sch.uk
www.postpals.co.uk
www.facebook.com/people/Stephanie-Nimmo/653854349
http://www.gosh.org/x-factor/the-charity-single/your-say/stephanie-nimmo/
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