This post so very nearly could have been the worst one I ever had to post, as it was, it has taken me a while to think back over what happened last week and how close we were to losing Daisy...
The beginning of the week had been lovely, the snow had really brightened everyone's spirits and Daisy enjoyed looking at (if not touching) the bowl of snow the nurses brought in for her. We had a great time with all the children together on Tuesday as Andy managed to get into work and I spent the day together with all four children in Daisy's room which was suprisingly manageable. On Thursday Daisy was quite clingy and pale and I kept meaning to ask the doctors what her haemoglobin level was as I wondered if she was at the point of needing another transfusion. I thought if it was the case it would give her a boost ready for our weekend at Chase Hospice.
It was Jules who discovered she had spiked a bit of a temperature. I brought him and Xanthe to the hospital straight after school and he was taking our temperatures and playing around with the stethoscope (as you do when you have spend the best part of your life since the age of 2 entertaining yourself in your sister's hospital room). We gave her some calpol and when I came back later in the evening she was sleeping peacefully but still a bit hot, after more calpol the temp came down a bit and as it was 11pm and I hadn't packed a thing for our trip to Chase I went home.
Within half an hour of my head hitting the pillow the phone went, thank goodness Daisy's consultant was on call that night as a locum registrar was covering the ward. Daisy's temp had gone through the roof (40.5) and her blood pressure had dropped suddenly. She had been given a saline fluid bolus to restore her blood pressure and started on 2 of her usual antibiotics and an antifungal to cover all bases before the blood cultures came back. I rushed up to the hospital (greatful for my recent investment in Primark leisure wear which meant I did not have to change) to find her fast asleep and the room like a fridge to keep her temperature down. She slept quite well that night and by the morning just looked completely washed out.
I was still half hopeful that this was just another Daisy blip and we would be allowed to go to Chase. If Daisy was our only child then it would have been easy to cancel but it was the thought of letting the other 3 children down who were so desparate to spend some time together as a family and not have part time parents/siblings. However I knew things were serious when Daisy's consultant arrived and said she was worried about Daisy. I know as a mum of 3 herself she would be the first to ensure we had quality family time together, so if she was vetoing Chase we know it was bad.
I called Andy to ask him to get home early as the children would be disappointed and left Daisy at 3pm to collect them from school and tell them the bad news that we would not be going to Chase. Daisy was not well at all at 3pm and I really did not want to leave her but this was again my usual scenario of leave Daisy to deal with my other children or make frantic arrangements with very accomodating school-run mums to pick them up until I could get to them. Andy and I decided that this time we would break our rule of trying to be as open and honest about the situation with Daisy as possible and tell a white lie as to why Chase was cancelled. The children are still indignant that the staff at the Hospice could not get themselves organised to dig their way out of the snow (one day I will tell them!) - we did not want them to resent Daisy for scuppering yet another weekend although without Daisy they would not have been going to Chase in the first place (I guess without Daisy they would not even experience the number of ruined weekends however....).
By the time I returned to the hospital Daisy had deteriorated really rapidly - she was shaking with rigor, her extremities were freezing and her bp had gone through her boots again. Two consultants were on the ward discussing a plan for her and nurses and registrars were in and out of her room - I took one look and phoned Andy to get to the hospital straight away.
Daisy has had lots of tricky situations in her life but this is the first time ever I have looked at her and thought she was not going to make it - I have never seen her deteriorate so quickly and be so close to death. The doctors were trying fluid boluses to bring her BP back up but this was not working, she was shutting down, overcome with septic shock. An anaesthetist was bleeped to intubate her and the search began for a PICU bed. Of course to add to this it was Friday night and snowing, roads were in chaos and major motorways closed (as always happens when this country has extremes of weather) . There was no bed at GOS, Daisy's main specialist hospital, at one point Manchester was mentioned - good in that there is a specialist in her syndrome there, not so good in that it would have been a 4 hour trip in atrocious conditions. Eventually a bed was found in St Georges, 10mins by blue light down the road. Daisy was deteriorating rapidly and dopamine infusion was started, and, when the paediatric intensive care transfer team arrived, noradrenaline. This seemed to do the trick and suddenly she turned the corner and we dared to breath a tiny sigh of relief. It was decided she did not need to be intubated and she was blue lighted to St Georges PICU, even managing a smile as she was wheeled on the stretcher out of the ward.
In the same way she goes downhill, Daisy bounces back very quickly. We were really worried that the infection was in her Hickman line and it would have to be taken out even though it was only put in two weeks ago. However she responded well in PICU and the bug was found to be one from her gut that had leaked into her bloodstream and overwhelmed her body. We have subsequently found out that if it had got into her lungs death was a 100% certainty, as it was we had been dealing with only 50% odds of survival. And once again the girl with 9 lives beat the odds, but the cost to Andy and I was considerably more grey hairs and worry lines.
So Daisy is back in Queen Mary's now, having charmed the team at St Georges, and back on lots of horrible antibiotic infusions which have toxic side effects which I try not to think about. She is amazing however - anyone else who had cheated death like she had would still be lying in bed, weak and feeble, but she has lots of living to do and is raring to go. She is back on feeds into her gastrostomy and as of today is on the momentous rate of 6mls an hour. In fact during all of last weeks problems the one thing to keep working was her tummy (albeit with only 3mls an hour going it), so Andy and I are taking some comfort that this may be improving.
We have been quite shell shocked since last weeks events, at the time you are carried along with the adrenaline of the situation, and on reflection wonder if it is only the fact that your love as parents makes you think that the worst could happen. However reality set in when each of the doctors who had been involved in rescusitating Daisy told me how close a call it had been and that they had thought she might not make it...........
We are so determined to get on with things now and get Daisy home at some point this year. We now have a date to go back to GOS at the end of March for another scope to see if the damage to her gut is improving and in the meantime we can try and push the gastrostomy feeds to help her system work and allow her the possibility at some stage of time off the TPN.
It's almost business as usual again now - this weeks problem remains high blood pressure and the plan now is for her to have a 24 ambulatory blood pressure cuff fitted to look into the pattern of her highs and lows, and then send her to a renal consultant at GOS to decide which drug to start her on to help manage it. She is also due her annual cardiac check up on her mild cardimyopathy and this is always preceded by a 24 hour ecg, so there will be at least a couple more nights of her being attached to extra monitors and tangled up in wires.
Now we know she is in hospital at least until the summer we have been able to get more permanent plans in place for Daisy's education provision. We held a multi-disciplinary meeting today to discuss her care - 18 people attended all involved in different areas of her life and this did not include all the medical doctors she sees. It is incredible the impact she has not just on our lives but on the lives of those involved in her care, this was so evident last week when we nearly lost her, so many people on the ward told me how worried and upset they had been and how relieved they were that she was alright, in four years Daisy has touched a lot of lives and while she is determined to keep us on our toes she is surrounded by the most fantastic team of people who just want her to win this battle and get on with life
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!)
special needs (86) costello syndrome (46) disability (34) Great Ormond Street (19) aspergers (19) TPN (18) cancer (18) carers (16) parenting (14) autism (10) shooting star chase (9) children's hospice (8) Blogging (6) family (6) SEN (5) hospice (5) Mitrofanoff (4) diagnosis (4) BIBs (3) Britmums (3) Neuropathic Bladder (3) communication (3) holiday (3) benefit cuts (2) david cameron (2) gastroenterology (2) singing hands (2) travel insurance (2) BSL (1) Child Hospice (1) Colectomy (1) antibiotics (1) benefit scrounger (1) bladder (1) france (1) health (1) line infection (1) makaton (1) portage (1) siblings (1) sign language (1) sign supported english (1) ultrasound (1)