So we got Daisy over her latest line infection and managed to save the line and life was ticking along, with the big focus on her next admission to Great Ormond Street. I had a call early last week saying that we were booked into a 5 day bed for her to have two procedures on two separate days under general anaesthetic. In complete frustration at the slow progress in moving Daisy from 6 hours off TPN to a regime where she would be able to come home I phoned the nutrition nurses at Great Ormond Street and basically said that Daisy, all of us, needed a life and we need to find a way to get her out of hospital and home.
Cue a second phone call from Great Ormond Street late last week, can we bring Daisy in that day, in fact asap, as a long stay bed had become available. Sometimes you have to be careful with what you wish for – one minute I was plodding along enjoying the few hours freedom in the day with Daisy and gearing up for a short term stay at GOS , leaving hopefully with a date to start TPN training and bringing her home, next minute I am frantically rushing around, phoning friends to pick up the children, ironing clothes and sorting out the million and one things that need to be sorted out when you have a family of 6 so that Daisy and I could transfer from Queen Mary’s to GOS quickly enough not to lose the bed. We arrived last Thursday at 8pm, not really knowing why we were there…
The first thing that needed to be sorted was another blood transfusion. Daisy has been chronically anaemic for a long time now and while she copes well with a haemoglobin level well below target levels every now and then this drops very low and she needs a transfusion. The levels of immunosuppressants are currently low in her body and the doses are needing constant tweaking and changing. The most exciting thing is that following my call to the nutrition nurses Daisy became the priority for home tpn training and set up and we arrived her to find there was actually a plan to get her home!
For the past few days we have been weaning down the hours Daisy spends on TPN – it’s early days yet but so far so good as she needs to be 8-10 hours a day off TPN to be allowed to go home on TPN. The dietitian has been keen to try and increase the amount of feed that is going into Daisy’s jejunostomy, however sometimes an increase of even a couple of mls and hour can upset the applecart with Daisy and for the past two nights she has vomited so we may not be able to push these feeds too much. However she is now allowed a two hours break from her milk feed pump which means for two whole hours a day she is completely free of tubes and wires and skips around like a little spring lamb – it’s the best sight in the world!!!!
The plan for the week coming is for Andy and I to start TPN training, fitting this around the two general anaesthetics that Daisy needs this week plus any thing else she throws our way (another transfusion is a possibility). Given that this is the first week of Andy leaving his old company on a redundancy package and starting up his new business this is a huge commitment on our part as he has had to completely rejuggle everything to fit this in. We have also had to completely rejuggle the children’s schedules to take into account Andy and I both spending all day at the hospital. But to get Daisy home this has got to be worth it.
So as I said at the beginning, be careful what you wish for.........I am so excited at the prospect of having all my family under one roof, but at the same so daunted, not by having to do the tpn, we will do whatever it takes to give Daisy quality of life and both Andy and I are dab hands at changing gastrostomy buttons, checking blood sugars, placing ng tubes....It's more the fact that for the past 9+ months we have been cocooned in this world of hospitals, desparate to get out and reclaim our role as parents, and reclaim our daughter. Now this is about to happen we realise how much we have depended on nurses and doctors being round us all the time, providing us with a security blanket, now it's over to us. I guess the thing I am dreading more than anything is night-time. Children with Costello Syndrome are notoriously bad sleepers, add into that reflux, tummy pains, beeping and leaking pumps, itchiness from excema, oversensitivity to noise and you get the recipe for broken nights. Theoretically we are entitled to some sort of night respite package but whether that will be forthcoming in the short term is another matter. And then there's the twitchiness about line infections and illness - we have seen Daisy go dangerously downhill very very quickly, this makes you very overprotective as parents and it will take me a while to feel safe without the comfort of a resus trolley outside her door and a picu down the corridor. The children will have to adjust too, they will get a full time sister back and parents who need to focus on her needs while in the house. The time we need to put TPN up is the worst time of the evening for parents - 6pm -7pm, right in the middle of tea time, activities, homework, bath time - our already very self sufficient children will have to become even more so. It will be so good to get back to being a full time mum to all of them, we are realistic in knowing that we will still get stays in hospital but nothing should ever be as long as this stay, who knows, maybe next year I can even get back to work!!!!!! (those who know me well will know this is only half a joke, watch out, maybe I will sign up for med school!)
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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