Home again Home again more troubles to face!

The day started too early as is often the case...planned rising 5.30am...actual rising 3.30am...courtesy Eve!



Oh it wasn't so bad I managed to get on with some washing on the cheap electric, tumbled one lot that had been hanging around a while and managed to finish packing the bits we would need with us. Transport was booked for any time from 7.30am...so of course that meant we were ready and waiting by 25 past, I decided to hang the washinjg out with Joshua's help whilst waiting, Everyone else was ready by 7.45 and Christina and Iris took Rosie for a walk to take her mind off raiding the fridge for a yoghurt...yoghurt is Rosie's favourite food at the moment. She asks for and collects other stuff..biscuits, crackers, crsips but they end up being swept up and thrown away a little while later...the only thing she eats with any relish in the morning is Yoghurt.



It was soon time for Jonathan to go to school...still not transport for us....Rosie was walked up and down and back to the house and out the chair ....to the fridge...back to the cahir another walk....still no transport.

Time for Joshua to go..washing pegged out all three loads...off they went..David having to take the minibus as he has to take Eve with him...still no transport.

By 8.35 as Iris and Christina headed off to school I was begining to wonder if they were goig to arrive...wondering if David was going to have to take us after all. Then at 8.50 I saw the ambulance pull into the farm yard and reverse....grabbed the bags and hobbled with Rosie in chair to the drive and there was no sign! ARGHHH they had turned and driven off...thankfully the neighbour a little way down the lane had assumed it was us they were after flagged them down and redirected them back to us. Rosie loaded, me sat in....slightly worried as the Ambulance had only two hooks for the chiar and nothing ot hold the front...the Ambulance man tried to assure me it was safe...I wasnt convinced and will need to check this for next week and Eve's trip.

It was a pleasant journey the Ambulance men were very chatty and interested in Rosie etc. We arrived at the hospital with plenty of time to spare. Arriving at the ward we discovered there was no bed...we were pointed in the direction of Ambulatory care..this is not a unit that is well suited to the care of a child like Rosie...soon we were ushered off to Ward D33 where a bed had been found and the staff were rapidly wrapped around Rosie;s tiny little finger!



Rosie then proceeded to take over the Nurses Desk...organised the staff stood around onto chairs...they were making the place look untidy! Mind you they were not permitted to sit on the swivelly chairs...they were BOTH for Rosie only!

The Doctors were systematically stripped of their stethescopes...Rosie strode back to her bed with 5 Stethescopes around her neck! Everyone had by this point fallen in love with her and she was the centre of attention for th enext half an hour...when suddenly it became apparant we were running out of time to do the paperwork for theatre...so three persons tried to take a history and care plan concurently! Amazingly we even managed to fit a conversation with the surgeon in there and resolved the issues of Eve's trapped wind issues for school...well in theory anyway...but that's another story!



Just as we were planning out walk to theatre the Aneasthetist arrived....only she was most deffinitely NOT Paul! Apparntly Paul was not there and this young girl was hoping to do Rosie's anesthesia, she assured me she had Pauls notes to go by....I assured her I was not happy! As we talked and I voiced my concerns she assured me she would get another Anesthetist...a consultant peadiatric aneasthetist...that was better...not Paul but better than a Fellow! PHEW!



We made the walk to theatre...passing the Surgeon on route who was pleased to see we had the Gastrostomy Tube as he was trying to remember where he had left it!



I hate the aneasthetic room so will bypass telling you about that and fast forward to lunch!

Walking back to the ward I detoured to the Restaurant where the only thing that appealed was a portion of chips and a bag of Revels! Picking at the chips as I wandered back to the ward I texted friends to pray and then rang David...



Back on the ward I was able to have achat with an amazing young couple whose son had been in hospital for most of his 10 months of life..he has a rare genetic condition and is crrently ventilated on CPAP with a tracheostomy. He is howver absolutely adorable and his parents really nice people. We chatted whislt I munched my chips and chocolate....perfect comfort food. Then I spotted the Surgeon enter the ward so went to see what had happened!



Apparantly Rosie has an obstruction in her OEsophagus...possibly a narrowing of the structures there. It had not been possible to pass the endoscope and he had therefore not been able to replace the PEG! He had put in another temporary measure, better than what we have been using but with the potential to be pulled out!

In the meantime he is aranging for an urgent Video Fleuroscopy to investigate the anatomy of the upper oesphagus. This does explain why Rosie has been reluctant to eat, gagging more on food, and preferring things like yoghurt and custards than proper food.



I went to recovery to collect the young lady who was really quite cross. The atempts to pass the scope had left her sore and cross! I ended up climbing on the trolley and cuddling her as the porter pushed us back to the ward. Slowly she woke up more, asked for biscuits and crackers and chocolate...but just piling them up beside her and cuddling down beside them.



The ambulance returned for us at 5.15 and we made our way home to await the next appointments! Rosie was reasonably happy most of the way home,a few agitated moments as she realy doesnt like being in the car strapped in. But she arrived home, had some peadiasure down her tube and settled down to sleep by 8 pm!



Another issue now to deal with...why has her oesophagus narrowed, what has caused it? Is there anything that can be done? Lots more questions very few answers! She has not eaten this morning before school but went off to school hapy and has so far remained happy there!



Meanwhile during the day yesterday David took a call from the LEA. There are further issues and concerns about Eve's school. THe mainstream school we want her to attend are having major concerns and worries about having her there....yet another issue to deal with!

Tired and stressed out here!

I would so like someone to let something go through and meet the children's needs without us having to battle for it!

sorry there are some lovely pictures on my phone from today but I have no idea how to get them on the computer!



I do not know what the future holds BUT I am glad I know who holds the future!