Daisy is Home!!!!!!!

Daisy is Home!!!!!!!!!!!

Obviously, given the time which has elapsed between this and the last post you can guess there were a few hitches along the way! We had been working towards coming home on Thursday 16th July and Andy and I had completed our TPN training and had done our first "live" connections and disconnections on Daisy. Very daunting as it really goes against your instinct as a parent to connect your child to a bag of fluids which while keeping her alive could also kill her if you get it wrong. Still, we did it and were all set to come home when out of the blue on Tuesday night she lost the ability to move her legs and was screaming in agony. Now I know that this blog is called "is this in the plan" but recently I have seriously thought about renaming it " well, we didn't see that one coming...."

There are times when I am so grateful that Daisy is already in Great Ormond Street Hospital, and last Tuesday night was certainly one of them as we had top doctors and nurse practitioners gathered around her cot scratching their heads and wondering what had happened to suddenly cause this acute episode. An ultrasound of Daisy's hips revealed she had fluid on both of them, so instead of going home we made yet another trip to theatre and the MRI suite to have her hips looked at and the fluid drained from them. Over the course of the weekend it was apparent that the only thing now keeping us in hospital was the 4 times a day doses of two different antibiotics to treat the infection in her hips....Andy and I were clearly competent in connecting and disconnecting TPN, taking blood, changing dressings, adding spec sets and changing smart sites, drawing up jejunal and gastrostomy meds and connecting enteral giving sets...we were more than happy to take her home on iv antibiotics. Cue visits from a few more hospital teams - infectious diseases, the unfortunate name of the team that look at children that have lots of infections (like Daisy)..Irony of ironies, the doctors from the infectious diseases team was the locum doctor who treated her in February when she nearly died of a line infection, the very man who phoned me at midnight and was treated to the spectacle of me in my Primark Leisure wear! He of course remembered Daisy, as anyone who ever meets her never forgets her, and ordered quite a few immunology tests. Although all of Daisy's recent infections have been from her hickman line, in common with many gastro children she also has a problem of translocation where the bacteria which normally sit in the gut move into the bloodstream, and being immunosuppressed to control her inflammatory bowel disease this is a major problem for Daisy.

We also met the lovely Dr from the Orthopaedic team (Xanthe insists he looks like Gary Lineker but in my myopic state I am reminded of a young George Clooney on ER). Daisy has been under the Orthopaedic Team at our local hospital for a long while now but this new change in events coupled with Daisy's need for Ankle supports and extra tight achilles tendons means that she is well and truly on the radar of this team now and will definitely need botox injections into her achilles tendons, probably surgery to lengthen her tendons and constant monitoring of her hips to make sure the fluid and inflammation does not come back.

Anyway, to cut a long story short, the fluid was drained from Daisy's hips, the physio's got her walking again, we were able to stop the IV antibiotics and around 3pm on Thursday 23rd July, almost exactly 10 months since she first went into hospital our daughter, Daisy Rose came home and our family became complete again......

I could blog about how wonderful the past 24 hours has been doing normal things like pottering around the house, going to the supermarket, cuddling up on the sofa, but the pictures speak for themselves. Needless to say it is difficult, even before this change our lives were diffficult as Daisy had considerable medical needs. These have now gone through the roof in terms of what we have to do and how we have had to adapt our lives but it means that our daughter is home with her brothers and sister and our family at long last is complete again!!!!!

I cannot finish this post without thanking and acknowledging the family and friends who have helped us on the rollercoaster - the secret gardeners who transformed our front drive, the ironing mother and mother-in-law, the friends who took children in at the very last minute, the people who texted, sent messages, called, sent cards, the nurses, doctors, health professionals.... - you all know who you are and we thank you from the bottom of our hearts, we could not have got through these times without you! Anyway, as Andy says, onwards and upwards, here's to the next chapter in our lives with our beautiful children......don't worry, I'll keep blogging, just want to smell the roses for a while......