Just keep swimming........
Those readers who have followed my blog for a while know that sometimes I drop off the blogging radar, mainly because of workload at home or sometimes because I have lost my blogging mojo. I guess the last few weeks has been a combination of the two. Poor Andy still has his arm in plaster following a (non-alcohol related) fall the day after his 50th birthday, and this has meant my workload has gone sky high as a broken
arm means no driving, no lifting and more importantly no medical care for Daisy (it's funny how much you need your arm to draw up meds, change catheters and also a plaster cast is not exactly sterile for TPN administration!).
Also - new year gives me that deflated balloon feeling....for me it's about what is this year going to throw at us? From one point of view 2012 was our best yet - the Olympics lifted our spirits Chez Nimmo and gave us something other than medical stuff to focus on, but from another viewpoint it was another year of major surgery, line infections and to be brutally honest, deterioration...
Has the surgery at the end of last year made a difference? Well the bit involving removing the last bit of her large bowel has but the bit involving her bladder and repairing her parastomal hernia has not. Daisy's bladder is as bad as ever and having had a long conversation with a nurse specialist from a support group I think that we will be headed down the bladder diversion route in the not too distant future, if it is even anatomically possible with Daisy's patchwork abdomen and minimal available small bowel. The hours she spends on her TPN drip have increased together with the volume which means that she has to go to school an hour later than she used to. What's an hour? Well that's five hours less a week she gets to spend with her friends. And is this the beginning of more and more increased hours. One of her carers asked the other day when she would go back to her normal TPN regimen and I had to explain that this was now it, her requirements are just going to go up and up.
Still lurking in the back of my mind is the question of transplant. This is the only option for Daisy but it is also not an option. Small Bowel transplants are becoming more and more commonplace but a child with a gene mutation like Daisy, well it just has not been done before - and if we were even to go down that route would it give her any increased quality of life or life expectancy given her other issues. There is doubt it would even get her off the TPN. But we want to leave no stone unturned, so I battle with whether I should push to have a transplant assessment so that we can have a definitive answer as to whether she is even a candidate.
I guess Daisy is in a reasonably stable state in that she's not boomeranging back and fore the hospital every few weeks with sepsis and line or bladder infections. But as always keeping her like this involves an increasingly complex regimen - 17 hours TPN a day, sometimes replacement fluids when her stoma output is high, 2 IVs a day, countless other meds, a complex pain plan, sedation for catheterisation....and now more and more physio to keep her walking and mobile and hopefully free from orthopaedic surgery a while longer. Oh and to top it all - on top of the intestinal failure and neuropathic bladder it appears that she is going through precocious puberty...
We have already re-started the twice daily growth hormone injections, stopped while she was on long term steroids, but now she is looking at more regular hormone injections to stop the puberty hormones in their tracks for a few years as the impact for a child on TPN and with Costello Syndrome is not good and could lead to premature osteoporosis and even more significantly reduced height potential. There is nothing in this mixed bag that Daisy continues to present to us that we cannot cope with but all together, after a while, it just becomes wearing and at the moment I'm really having trouble shaking off this feeling of "what if this is as good as it gets?"
I know - it's an incredibly selfish thing to say - many, many of my very close and special friends would give anything to swap with me and take what we have now just to have their child back in their lives, and I know that despite all the odds Daisy continues to surprise the doctors who did not believe she would reach her 8th birthday. But am I supposed to be reassured by the stories of advances made in TPN that mean people are living well into adulthood on this intravenous nutrition? That's fine if, like many able bodied adults and teens, you can put up your own TPN or at least manage a large element of your own personal care......
I'm struggling with a huge moral dilemma - I want Daisy here forever, I want her amazing sense of humour, her funny ways, her lovely hugs and stories and beautiful face , I can take the Costello Syndrome, the learning disability, the physical disabilities that make her so reliant on adult helpers - but the thought of years and years stretching out putting up IV drips, administering injections and dealing with all the issues around her intestinal failure and neuropathic bladder - do I have the physical and mental stamina to still be doing this 10 years, 15 years from now with no hope of improvement? I feel dreadful even putting it into writing but I guess Andy turning 50 just puts it into perspective for me - many of the children now growing up with Costello Syndrome will live longer thanks to medical advances, they may be able to move into sheltered accommodation - some of them already do, some of them go to mainstream college, I know of one young american adult who can now drive, some ski, some skate, some swim - not all of them, And then the families we know with children on TPN - some have the hope of transplant, some have nights off TPN , some are weaned off TPN - not all of them.....
I just wish we had the chance of something more for Daisy - she has the hope, because of medical science, of a longer life, but completely dependent on us for all her medical care. What if we are not around - Daisy can't live in sheltered accommodation - she would need round the clock specialist nursing care, where would she go....
Perhaps it is just the post- new year's eve blues - I love my little girl so much but the cost of that love breaks my heart - to have my little girl in my life and with all the joy she brings both she and I have to be shackled to a relentless routine of medical care,
We are going to the Costello Syndrome Conference in Florida this year - thanks to the generous donations of friends and family and a very generous donation by a local trust we (Andy and I) will fly with Daisy to the states for 10 days this summer to meet with the other families and more importantly meet with the medical experts. We know in Costello terms Daisy is completely and utterly unique, maybe the doctors will not have any new ideas, but we have to try, we have to make sure we leave none of those stones unturned, we have to hope that something will improve, that we can try something.
I'm so happy we have reached an 8 year milestone with Daisy but it's so hard to pace yourself when you don't know how long or how far you will be going I guess. I guess once again I'll have to take my inspiration from Pixar and just keep swimming.....
Websites close to my heart
- Shooting Star Chase (Daisy's Hospice)
- Great Ormond Street Hospital Children's Charity
- Torbay Holiday Helper's Network
- Sick Children's Trust
- Daisy's Angels - Facebook Page
- About Costello Syndrome
- Asperger Syndrome
- Caudwell Children
- Together for Short Lives (Children's Hospices in the UK)
- Costello Syndrome Support Group
- Give Kids The World
- PostPals - Putting Smiles on Sick Children's Faces
- Singing Hands (Daisy is their No1 Fan!)
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