Well here we are back in our favourite Bloomsbury residence - Rainforest Ward. This is the planned admission we have been waiting for, the one where maybe we will have even more answers and perhaps a plan for more surgery. This has been planned to be the week when Daisy will have a set of scopes to look at her bowel at both ends and she will also have an manometry to look at the function of the small bowel, this hopefully will help the doctors plan how to manage and treat the high losses she gets from her ileostomy and the pain she experiences at night.......
Over the past few weeks her night time pain has just been getting worse and worse, with our symptom care team we have thrown more and more drugs at her, with the result that I am convinced that the reason she is so happy in the morning is that she is high as a kite. Sadly though the drugs are not working on her pain and all we are doing is managing the symptoms and not the cause, which I am convinced is coming from her defunctioned large bowel. Our hope is that this admission will convince the doctors to proceed with putting in place plans to remove this dysfunctional colon, which biopsies have shown will never work, in the hope that it will help with her pain. However as always with Daisy the best laid plans go wrong, and no-one, least of all the nurses and doctors on Rainforest Ward were suprised when Daisy spiked a temperature last night and became unwell....this has resulted in the plans for this week of tests and two anaesthetics have had to be put on hold, IV antibiotics have been started and Daisy's pain medication has been ramped up again.
To add to everything, the trans-gastric jejenal tube which delivers meds and some milk feeds into the top part of her bowel was accidentally pulled out during her last hospice visit so we are limited to just TPN for nutrition and whatever water she is able to take orally during the day - we had also hoped to have a new transgastric jej placed under anaesthetic during this admission. It is a relief in some ways, at least she was in hospital, and most importantly in the specialist hospital, when she became unwell. I don't need to convince the medical staff how much pain she can experience at night, they know, but it is always good for them to see it so that plans for management and treatment can be formed. I am convinced this is the crisis that we have been waiting for, the pain meds have just been going up and up and while we just keep throwing more and more drugs at her we are not getting to the root cause. My instinct is that her colon has now flared up and is inflammed again, the discharge from her rear end indicates this and she constantly localises pain in the area of her colon, she is really tender to touch there at the moment.
I am almost hoping that now she is in the decision will be finalised about removing her colon, in my mind I am set for a long stay with some sort of surgical outcome. She could also have a surgically placed jejenostomy at the same time as the colectomy surgery which would save further anaesthetics if it came out again as I could replace this type of tube once I was trained. Obviously the downside to all of this is that we are talking about big surgery again with all the risks of anaesthetic, infection, bleeding, Daisy does not recover well from anaesthetic or surgery but it may give her the chance of being out of pain at night and also we would avoid yet another long summer holiday in hospital, something I want to avoid at all costs. The reality is, however, that none of us can go on with the amount of pain Daisy experiences at night, often she has a bruise on her forehead where she has banged it in frustration against the side of the cot in pain, she is worn out and we are worn out and it is no way for a family to live.
In the meantime we have to wait for blood culture results to see if the infection is in her blood stream and also a plan to reschedule her upper and lower endoscopies, manometry and jej tube replacement and then a conversation about the results and a probably colectomy.. nothing is ever done by halves in Daisy's world....
Of course the icing on the cake is that it is half term - yet another school holiday where the family is torn apart. Andy has taken the older three to France for a few days, at least they are all getting some sea air and I look forward to the wine and cheese they will bring back, my hope is that I will be able to take the older children at least to France for part of the Easter holidays, who knows, maybe Daisy will be well enough to join the whole family? Our biggest wish this year is to have the summer holidays together, and we will make this happen whatever is thrown in our path as a third year of summertime spent apart is just not an option, the children are growing up too quickly for this and we need to be together.
Which brings me to another battle we have been fighting on behalf of one of our other children. I have discussed blogging this with Theo and he is comfortable letting people know as he wants the world to know there is a reason for what can sometimes appear to be his odd behaviour. Theo has Aspergers Syndrome, this is something we had suspected for a long time but a combination of worries about Daisy, hope that it was just a phase or down to anxiety about our situation and a smattering of middle class denial has meant that Theo has only recently had a confirmed diagnosis. The signs were there since early childhood and I am grateful that many of the things that make Theo the amazing, intelligent, funny person he is are in some ways due to the fact he has Aspergers, he is not defined by the syndrome but it is part of who he is. Unfortunately puberty can really exacerbate some of the negative elements of Aspergers and this has resulted in problems in school and home, especially with anxiety and meltdowns. We are now working with our local authority to get Theo a statement of Special Education Needs in order to get him the support he needs in school (things like laptops, extra time in exams), we also are working with an Occupational Therapist, who just happened to be Daisy's first OT, to address some of Theo's sensory issues which can come with the diagnosis - he cannot cope with bright lights or too much noise and has to have time out breaks when he has sensory overload, this has caused him problems in school before where he has unconciously stood up and walked around the class in order to "get his head together" in the middle of a lesson, or rocked back and fore on his chair. He has been suffering from bad migraines for a while now and much of this is down to being overloaded. Andy and I have had a very steep learning curve as we try to understand Aspergers and how best to help Theo, again we have had to become experts very quickly in order to support and advocate for our son. In many ways it has given us a sense of relief, there is a reason for the meltdowns and our parenting style has had to adjust to parenting a son with Aspergers, breaking down instructions is one example, making sure that we stick to plans and he knows them is another.
Of course sticking to plans is not possible when you have a child like Daisy - once again she is in hospital and the plan has gone pear shaped, this makes Theo anxious and we have to manage his anxieties and stress. And on top of all of this we have two "typical" children in the middle who need time and love and care - all of this is a full time, full on job!
Again, Andy and I wonder how we cope, I guess we are eternal optimists, we have our unwritten rule whereby if one of us is down the other is not allowed to be, and we desparately try and make time for eachother. On Sunday evening we have a babysitter looking after the older three while Andy comes out to the hospital and we will pop out for a few cheeky glasses of red. We also have another project in the pipeline as we eagerly await the arrival Tulip, our vintage, orange VW camper van (called Tulip as she is originally from Amsterdam). We are hoping to have some fun family days out in Tulip and Andy is also looking forward to taking the boys to some campervan meets and festivals. In fact we are planning in our eternally optimistic way to take Daisy to her first music festival in July. We hope to meet up with old friends at Guilfest, Andy will camp with the boys in the van and as our hospice is not too far away Daisy, Xanthe and I will have a bit more luxury staying at Chase for the weekend!
I have set a mental deadline of Easter for this latest glitch to be sorted, I want the summer months to be about family time and fun - barbeques, day trips, cycling - once again, here's keeping everything crossed...
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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