Coming back to the local hospital was such a relief but at the same time reality has hit us a bit. Last week we kept going with the adrenalin of dealing with all of Daisy's issues and the medical emergencies which always seem to happen when we are at Great Ormond Street (not to mention the battles with bureaucracy). Now we are back to a slower pace and trying to juggle school runs, afterschool activities and childcare with minimal sleep. Andy and I are taking turns to spend evenings in the hospital, leaving at about 10.30pm and I return at about 8am after dropping the children off at a friend's house and Andy at the station, what sleep we are getting is not great as we are torn between needing to be with the 3 older children and being with Daisy. The reality is though there was no way I could continue to spend every night with Daisy in hospital, the nurse handed over this morning that she had had a very restless night, awake and crying and needed top up pain relief overnight. At least the night nurses can go home and catch up on sleep, that's impossible for me as Princess Daisy does not sleep at all during the day - in fact both of us are in serious need of some undereye concealer.
She is still on 24 hour TPN and IV steroids as well as iv antibiotics for a UTI. We hope to transfer her to steroids through the gastrostomy tomorrow but will not think about gastrostomy feeding until next week. I just have a feeling that we will be going home on TPN, even if it is night-time only with some gastrostomy feeds during the day.
As we are going to be in for a while, stuck as always in isolation because of her immuosuppressed status and the lovely MRSA colonising her gastrostomy, we have been trying to put some better support in place for her. Daisy has lost a lot of muscle strength since being in hospital so the physiotherapists are going to see her at least a couple of times a week, they brought a floor mat up to her room and it was great to just sit on the floor with her and play row row the boat. The ward teacher has also been in touch with her school so that we can still work on all the things we had started at school. I'm really hoping that they will send someone in even just once a week so that we can continue with her signing - it was coming on so well and she really needs specialist input to help her communication skills. Daisy's receptive skills are great, she understands loads, she has problems communicating however, although I have found she is pretty good and making her feelings felt, most of the ward staff know the sign for "finished" and "no".
The pace of things has slowed down a bit for us for now, but for one of my friends things have picked up. She and her son have been in isolation in another London hospital waiting for a bowel transplant. The call came today and as I write he is halfway through his operation. We met through our hospice and at the time Daisy was possibly going onto TPN, her son has been on TPN for a long time, so she has been a source of info for me, together with our shared adoration of the luvverly Lee Mead (Joseph & his technicolor dreamcoat). She was actually interviewed on the news earlier this week as the issue of organ donation has been very much in the news. We now know two families whose children have benefitted from a donor organ. These children have been given a second chance of life when there was no other hope because a parent in their time of grief gave permission for their child's organs to be donated to help another child live......
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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