Friday, May 11, 2007

It never rains but it pours...or gushes...

We have had a CHAOTIC day, starting last night. I was washing up and about to go to bed nice and early so I can get up for my run. I heard some water tricking and opened the cupboard below to find quite a steady trickle from the pipe. Next, a river and, within 30 minute an utter torrent. The noise was really quite alarming! I couldn't find the stop cock (still can't find it!) Water was gushing into the house and I had to wait 2 hours for a 24 hour plumber. Paul was out and it was a total disaster. Then, the electrics went, doubtlessly due to a very soggy mains wire under the kitchen. William is dependent on his pump and nebulisers and his TPN has to be kept in the fridge. Paul came home and took the TPN to the hospital to get it in a fridge and the electician arrived and switched the water off at the street. The sound of quiet has never been so welcome, even if it did cost me £140!!!

Luckily, we managed to get the electric back on.The cause of the problem was simply a join in the pipe that had come loose and, under the pressure of the leak, popped off.

I eventually got to bed at 2 Neither of us heard the morning alarms so it was one of those run around chasing your tail, getting later and later mornings. I was relieved William's respite nurse was coming so I could leave some of his care to her but she was also having a shocker (and continued to do so as you will see) so arrived late. Hope walked to school alone but Ellie and I were late.

William, the respite nurse and I arrived at the hospital for his blood transfusion. All progressed fine so I left them to it, explaining to her exactly how to get home. She has been coming to William almost every week for a year now so is well known to us all so I felt confident leaving him. I needed to sort out the insurance (of course, the floor is knackered, and one of the kitchen cupboards) and finish washing and tidying the cupboard contents.

It was all sorted with just over an hour to go before needing to pick up the girls so I set off on my favourite run for the time frame, looking forward to getting off the road and over the Addington Hills (despite the rain). I had only gone about a mile and still in Central Croydon when the phone rang and it was the hospital

William has a gastro-jejenal tube. This has two ports, one that sits in his stomach to drain away the nasty acidic bile that collects there as his stomach empties very slowly, and another port in his jejenum to enable drugs to be delivered there as they irritate his tummy. This is held in place by a balloon on the inside of the stomach. William had been on a bed (he usually sleeps in a cot) and had looked like falling and, in preventing him from doing so, this tube had been torn out, balloon still fully inflated! I stopped my run to make numerous calls to sort this out, as I still had to collect the girls so could not do it myself. Among the bag of emergency kit we carry with Wills, is a normal gastrostomy to insert if the tube should come out as the stoma can close. I explained to the staff how to do this.

After I had sorted things out (or so I thought) I had 30 minues before the girls needed picking up so I decided to do a 5K tempo run. I really needed to burn off some adrenaline as I was pretty cross this had happened as we are so so careful of William's tubes. Without really trying, I ran much faster than usual and smashed my current 5K PB (which was my first ever run so pretty out of date) by 7 minutes at 23:53! I could be a safe bet for the Hydro Active. I hope I can do this time when not so pumped up and stressed as I am hoping for a sub 25 mins.

Things were not so settled at the hospital though and I received a series of calls, on the way home from school, about the tube not draining and X-rays confirming its place etc etc. I was confused as it is a simple thing to insert the basic tube. I suggested I should come up and sort things out but was reassured all was OK and they would be on their way home soon. I stayed home as I didn't want to pass them on route. Unfortunately, all William's gastro specialists are at a conference this week so I can't arrange for things to be properly sorted until next week, when Wills will need a small operation to insert the new gastro-jej tube. I sat at home, desperate to scoop him up, give him a cuddle and make sure all was OK as it had been a rather traumatic pull on the tube.

After a while of wondering why it was taking so long for the 30 minute bus journey, I got a call from his respite nurse to say they were lost! The reception was dreadful and I had no idea where she was and how they could have got there! It was really worrying. I thought about poor Madeline's family as, all I was going through was not knowing where abouts in my own town William was with someone I know but I was still so so worried. It got a bit on top of me I must admit. Wills is so vulnerable and I felt I should have been there with him to prevent these things happening. It could have been so much worse too. The truth is though, I need these respite breaks and a blood transfusion is a routine, regular event for Wills so it wasn't wrong of me to leave him in the care of a nurse he knows well while it took place. Eventually, they got home (2 hours later) wet and cold. The poor girl had a nightmare shift with Wills and was very upset about everything that had happened. I checked his tube and saw the problem immediately. It was WAY to short, the consultant who insterted it had threaded it below the stomach, into the jej. Hence the X-ray. He was in agony. This tube is not designed for this and was not being held in place properly. I reinserted it and, low and behold, loads of gas and aspirate poured out! Once again, I thought that I really should be there 24/7 as it seemed several nurses, a registrar and a consultant did not understand the specialist issues in William's care and treatment.

It took me ages to get the poor thing settled and the girls' moods escalated in reflection! A nice family meal with them and all is now calm. My wine bottle is open and my remaining Easter egg by my side with a "Lost" DVD and a novel. The remaining untidyness can stay remaining until tomorrow!


diddyangel said...

You poor thing it really never rains but pours in your house! Please don't feel guilty about leaving wills you need a break!! COngrats on the time of the 5k thats amazing! Hopeing to catch up soon.
Lots of love xxxx

Becky said...

Yikes, what a day!

Poor William and his tube! Not nice that he needs more surgery to correct it, either.

Hope you can get your plumbing stuff fixed soon, something you REALLY didn't need on top of everything else.

Between your house and Paul's flat, water doesn't like your abodes!!!

Sending you lots of hugs, and lots more for William too.

Becky xxx

Shadow said...

Gosh you lot go through so much. I'm so glad you've got your running to help you chill a bit - and have some YOU time! Well done on the time - we'll see you smash it again at the Hydro no doubt, can't wait to see you again there!!

We're coming to London soon too - will try to remember to get in touch, perhaps we could meet for a picnic?!

Love and hugs.xx