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…
4 May 2010
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/
12 October 2009
Apologies again for not updating more frequently - I'm sure I'm breaking the European Working time directive rules on the number of hours I work, on an unpaid basis, nursing Daisy, let alone looking after the rest of the family....
Again, so far, so good - apart from the usual dramas our lovely daughter throws in our path. This month's rare occurence which befell Daisy was a 1cm hole in her hickman line. As you can imagine a hole in a line which goes straight into her heart is not desirable so as always we had panic stations.... I noticed the problem when flushing her line on a Friday morning (it's always a Friday!), there was a strong smell of TPN in her room and when I flushed the line I saw the hole. I now know that repairing a hickman line is not straightforward, initially, in my naivety, I thought it was a case of calling the community nurses to come and carry out the repair, obviously not. There are limited people who can carry out hickman line repairs, and no-one in our local NHS trust could do this. In fact, I have since discovered that in some areas a repair would not even be attempted, instead it would be a case of removing the line and inserting a new one. As you have guessed, it was time for another trip to Great Ormond Street and a three hour stint with their fantastic nurse practitioners who, after a couple of false starts, repaired the line....
Of course it shouldn't have happened in the first place, holes in hickman lines are rare, especially in such a new line, but rare and Daisy go together! And as always her timing was impeccable - not only was it a Friday, but Andy's parents were due to arrive from Scotland having not seen the children in a year and Theo was due to return home from his Ocean Youth trust trip. Major multi-tasking and, as always, wonderful help from Chase hospice, and everything was sorted in time.....
Apart from this drama, our month has been spent trying to get back to some semblance of normality as a family again. We have all spent a year living on our nerves and separated from eachother, and the scars run deep. While superficially it looks like the children have coped well, Andy and I have realised how difficult it has been for all of us. Theo had his first year of high school with minimal support from his parents, often coming home to an empty house and cooking a meal for himself. Jules and Xanthe went to after school club or to friends houses. Andy and I were like ships that passed in the night putting all our energy into the children. Now we are all just relishing being under the same roof and enjoying the simple things....Theo is loving having his parents there when he comes home from school, Xanthe likes our pampering evenings, Jules is able to have friends back home to play. Daisy remains the centre of attention, but in a positive way. Andy and I are happy to be back home, able to catch up on TV together and share a joke....
Life is still tough but at least we are all at home. Every day I spend an hour in the morning doing the TPN and meds and getting Daisy ready for the day, the same again at night....It is physical work that requires maximum concentration. Before Daisy's deterioration she was on 24 milk feed through a feed pump and around 13 different meds a day. Now the feed pump time is reduced to 10 hours but she then has 14 hours on TPN and still the same number of meds, just different ones...ontop of this is her physical problems, her splints, without which she can no longer walk, the pain at night, the yet to come health problems.
She now goes to school for four hours a day and the benefits show on a daily basis. She is becoming more and more vocal and cognitively is really bright. The school is going to start progressing her from using makaton to British Sign Language as her brain works quicker than her ability to acticulate herself. We are really hoping that in arming Daisy with the skill she will benefit in the long term as she can really get across her feelings. Of course this will mean that Andy and I will need to learn BSL - we are really excited about this prospect.
After half term Daisy should go to school full time - paperwork and bureaucracy permitting! The next battle will be to sort out transport to get her to school and back as most children in special schools are taken there in buses and taxis . Daisy will need an escort, so this will be put to yet another committee for funding approval.....This is what drags you down as a parent of a disabled, medically fragile child - you spend your days fighting to keep them alive, fighting for the best for them and it all boils down to paperwork, panels and case conferences, none of which,you, as a parent, have a say in....
I do sometimes wonder if Andy and I were not so articulate, educated and determined to cut through all the red tape which prevents our daughter getting what is her right, how she would do......
Anyway, as I said, so far, so good, we are staying away from hospital and doing the nursing stuff at home, life is better, we are all together ....
Again, so far, so good - apart from the usual dramas our lovely daughter throws in our path. This month's rare occurence which befell Daisy was a 1cm hole in her hickman line. As you can imagine a hole in a line which goes straight into her heart is not desirable so as always we had panic stations.... I noticed the problem when flushing her line on a Friday morning (it's always a Friday!), there was a strong smell of TPN in her room and when I flushed the line I saw the hole. I now know that repairing a hickman line is not straightforward, initially, in my naivety, I thought it was a case of calling the community nurses to come and carry out the repair, obviously not. There are limited people who can carry out hickman line repairs, and no-one in our local NHS trust could do this. In fact, I have since discovered that in some areas a repair would not even be attempted, instead it would be a case of removing the line and inserting a new one. As you have guessed, it was time for another trip to Great Ormond Street and a three hour stint with their fantastic nurse practitioners who, after a couple of false starts, repaired the line....
Of course it shouldn't have happened in the first place, holes in hickman lines are rare, especially in such a new line, but rare and Daisy go together! And as always her timing was impeccable - not only was it a Friday, but Andy's parents were due to arrive from Scotland having not seen the children in a year and Theo was due to return home from his Ocean Youth trust trip. Major multi-tasking and, as always, wonderful help from Chase hospice, and everything was sorted in time.....
Apart from this drama, our month has been spent trying to get back to some semblance of normality as a family again. We have all spent a year living on our nerves and separated from eachother, and the scars run deep. While superficially it looks like the children have coped well, Andy and I have realised how difficult it has been for all of us. Theo had his first year of high school with minimal support from his parents, often coming home to an empty house and cooking a meal for himself. Jules and Xanthe went to after school club or to friends houses. Andy and I were like ships that passed in the night putting all our energy into the children. Now we are all just relishing being under the same roof and enjoying the simple things....Theo is loving having his parents there when he comes home from school, Xanthe likes our pampering evenings, Jules is able to have friends back home to play. Daisy remains the centre of attention, but in a positive way. Andy and I are happy to be back home, able to catch up on TV together and share a joke....
Life is still tough but at least we are all at home. Every day I spend an hour in the morning doing the TPN and meds and getting Daisy ready for the day, the same again at night....It is physical work that requires maximum concentration. Before Daisy's deterioration she was on 24 milk feed through a feed pump and around 13 different meds a day. Now the feed pump time is reduced to 10 hours but she then has 14 hours on TPN and still the same number of meds, just different ones...ontop of this is her physical problems, her splints, without which she can no longer walk, the pain at night, the yet to come health problems.
She now goes to school for four hours a day and the benefits show on a daily basis. She is becoming more and more vocal and cognitively is really bright. The school is going to start progressing her from using makaton to British Sign Language as her brain works quicker than her ability to acticulate herself. We are really hoping that in arming Daisy with the skill she will benefit in the long term as she can really get across her feelings. Of course this will mean that Andy and I will need to learn BSL - we are really excited about this prospect.
After half term Daisy should go to school full time - paperwork and bureaucracy permitting! The next battle will be to sort out transport to get her to school and back as most children in special schools are taken there in buses and taxis . Daisy will need an escort, so this will be put to yet another committee for funding approval.....This is what drags you down as a parent of a disabled, medically fragile child - you spend your days fighting to keep them alive, fighting for the best for them and it all boils down to paperwork, panels and case conferences, none of which,you, as a parent, have a say in....
I do sometimes wonder if Andy and I were not so articulate, educated and determined to cut through all the red tape which prevents our daughter getting what is her right, how she would do......
Anyway, as I said, so far, so good, we are staying away from hospital and doing the nursing stuff at home, life is better, we are all together ....
17 September 2009
Well, so far, so good, I am pleased to report we are still out of hospital and only visiting as an outpatient. My workload has not eased however as now is the time to fight all the other battles that have been put on hold for a while. Examples of these included sorting out a proper bed for her which will enable me to do her IVs without breaking my back and which will keep Daisy safe when she thrashes around at night in pain. We have had a few false starts with our wonderful Primary Care Trust on this one and two, totally unsuitable, beds have been provided already. The third one will arrive hopefully in around 6 weeks so I am really hoping it is third time lucky. In the meantime we are improvising, my wonderful friend's wonderful carpenter husband has adapted a second hand cot bed with higher legs and a door which opens outwards - thank goodness for friends like this as I really do not know how I would have coped with an ordinary cot in the meantime.
Another battle is to get Daisy the support she needs in school. Prior to her massive increase in medical needs (when her needs were still very significant) Daisy had a one to one learning support assistant for 4 hours of the school day. We now have to demonstrate to the education authority why she needs a full time assistant - it's patently obvious, but unfortunately there are massive bureaucratic hoops to jump through to achieve this so in the meantime she is back at school, but only for 4 hours a day.
Daisy is loving being back at school. It is a specialist school for children with visual impairments in the most wonderful location between Wimbledon Common and the All England Lawn Tennis Club. The facilities and staff are outstanding and even in just a few days back in school Daisy is coming on in leaps and bounds. The staff are so happy to have her back, everyone seems to know her there and I just hope that she can have a really long run of time back at school so that she can continue progressing.
I have my usual battles with the medical issues, we now have a date for her rheumatology appointment, this is at the end of October. I am still trying to get a date and plan for her surgery on her feet. These are getting worse and worse, she can no longer stand up without wearing her foot splints and even with these on she is unsteady and falls easily. I am so concerned that this surgery needs to happen very soon as I don't want her to lose the ability to walk. We are waiting for a date to go back to GOS for the TPN/Nutrition Clinic. Despite pushing up the volume of TPN Daisy is receiving she is continuing to lose weight and I am trying not to worry too much but you can't help wondering if there is a more sinister reason behind why this is happening...
Anyway, the next couple of days are an opportunity for me to put all of these worries behind me. Tonight I am staying at Chase Hospice with Daisy, tomorrow Andy and I are going to Wembley Stadium to see Coldplay as our wedding anniversary treat to ourselves. This will be our first night off in a year as Gemma will stay overnight in Chase to do Daisy's TPN. On Saturday, Andy and I will stay in Chase without the other children (mum is looking after them for the weekend). After we have put the TPN up we are going out for Dinner! This will be the first time we have stayed at Chase without the other children and with Daisy now TPN dependent this is the only chance we get to have a proper break. On Sunday mum will drive to Chase with the rest of the children so that we can all enjoy the famous Chase Sunday Lunch as a family.
Being at Chase is giving me a break from all of the stress I deal with on a day to day basis. This service is provided completely free to our family and is funded almost entirely by voluntary donations - without Chase I really don't know how I would cope.
I'm off to bed now, no getting up to Daisy tonight and no school run tomorrow - bliss!!!!!
Another battle is to get Daisy the support she needs in school. Prior to her massive increase in medical needs (when her needs were still very significant) Daisy had a one to one learning support assistant for 4 hours of the school day. We now have to demonstrate to the education authority why she needs a full time assistant - it's patently obvious, but unfortunately there are massive bureaucratic hoops to jump through to achieve this so in the meantime she is back at school, but only for 4 hours a day.
Daisy is loving being back at school. It is a specialist school for children with visual impairments in the most wonderful location between Wimbledon Common and the All England Lawn Tennis Club. The facilities and staff are outstanding and even in just a few days back in school Daisy is coming on in leaps and bounds. The staff are so happy to have her back, everyone seems to know her there and I just hope that she can have a really long run of time back at school so that she can continue progressing.
I have my usual battles with the medical issues, we now have a date for her rheumatology appointment, this is at the end of October. I am still trying to get a date and plan for her surgery on her feet. These are getting worse and worse, she can no longer stand up without wearing her foot splints and even with these on she is unsteady and falls easily. I am so concerned that this surgery needs to happen very soon as I don't want her to lose the ability to walk. We are waiting for a date to go back to GOS for the TPN/Nutrition Clinic. Despite pushing up the volume of TPN Daisy is receiving she is continuing to lose weight and I am trying not to worry too much but you can't help wondering if there is a more sinister reason behind why this is happening...
Anyway, the next couple of days are an opportunity for me to put all of these worries behind me. Tonight I am staying at Chase Hospice with Daisy, tomorrow Andy and I are going to Wembley Stadium to see Coldplay as our wedding anniversary treat to ourselves. This will be our first night off in a year as Gemma will stay overnight in Chase to do Daisy's TPN. On Saturday, Andy and I will stay in Chase without the other children (mum is looking after them for the weekend). After we have put the TPN up we are going out for Dinner! This will be the first time we have stayed at Chase without the other children and with Daisy now TPN dependent this is the only chance we get to have a proper break. On Sunday mum will drive to Chase with the rest of the children so that we can all enjoy the famous Chase Sunday Lunch as a family.
Being at Chase is giving me a break from all of the stress I deal with on a day to day basis. This service is provided completely free to our family and is funded almost entirely by voluntary donations - without Chase I really don't know how I would cope.
I'm off to bed now, no getting up to Daisy tonight and no school run tomorrow - bliss!!!!!
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