Home, but stressed

We are home again - only just. After a complicated day of plans and changes to plans, one person happy for us to go and another not... William is sleeping in his own bed, Hope and Ellie are arguing in their bedroom and I am on the sofa with a cup of tea in hand. The house is in rack and ruin around me with bags and piles of stuff bought backwards and forwards from hospitals over the last few months. It seems we are never quite sorted from the previous admission before back in again. I must admit, it is starting to get hard for all of us as we just can't get a decent run of relaxing and enjoying being a family without another panic as William is spiking a temperature again. I am finding our current fragmented existence very difficult and tiring.

William is well in himself but still has resistent pseudomonas bacteria in his intestines and lungs and still some floating about in his line. This is why we nearly didn't make it out of the hospital door. William's IV antibiotics had to be changed and, ideally, he should have a couple of doses to make sure he is not going to react and blood levels done before coming home on them. Luckily, after much discussion and compromise, it was agreed that we can come home with William on a monitor (he will remain on a monitor overnight now as an alarm to indicate increase in heart rate is the only way we would know if he was spiking a new temperature and could be indanger of septic shock ) and us being extra vigilent and his bed being kept open for 24 hours just in case. Sometimes, I can just live with the fact we are staying one more night but, this time, William is fine in himself and we want to be home together for the Easter weekend. Wherease, in the Chelsea and Westminster, we can at least relax and make a drink and some food in a microwave, our local hospital have declared it against health and safety for parents to use a kettle so you can't even make a cup of tea. That makes such a difference and I think my mental health and safety is much more compromised by being denied this basic thing than my physical health and safety could ever be by the tiny risk that I may scald myself.

A further complication to the day has been William's TPN pump. Our pump has been withdrawn and we were given a new one a few weeks ago. Rather worryingly, given the huge infection risks with TPN, the new giving sets leaked so we were told to go back to the old one. The old one was finally withdrawn at the end of March so, since then, would not have been replaced if there was a problem. I must add, its withdrawal has nothing to do with any problems in it's function to deliver TPN. Our TPN company found out we are still using the pump today, even though we were waiting for them to tell us when the problems with the new one were ironed out. We were told to stop using it immediately and that new giving sets with the initial problems resolved would be delivered to us today. These came too late for William's hooking up time so I used the old pump. Our nurse rep from the company phoned with a sigh and silence, followed by, "I just hope nothing goes wrong with it tonight" - why on earth should it when it has been fine for the best part of a year!! I am certainly not in the mood for spending half the night making sure there are no leaks. The rep is coming out at TPN time tomorrow to talk us through the new pump again so, all being well, we will start using it again then.

The reason the new giving sets did not arrive is the same as why poop Paul spent 11 hours on the roads today collecting the girls from Mum and Dad in Stoke. The poor things were stuck in horrendous holiday traffic! Paul had to go straight out again to collect all William's IVs and is only just arriving home now.

Well, I have babbled on enough. I'm sure the mood of Chez Milne and Hopwood is ringing out from the screen. We are all pretty tightly wound right now (well, actually, the children are pretty chilled as Hope and Ellie had a lovely time Mum and Dad's and William gave a content little wiggle when being put into his own bed) Paul and I are pretty tightly wound though but a glass of wine and cuddle on the sofa will soon solve that!!!