The Hospital Stay

This was not the best of experiences from beginning to end.
Ambulance transport was due to collect us at 7.30 to be on the ward for 9 am. Architect and builder were here at 7am to discuss some isues, Rosie was ready and in her chair at 7.25 and bags packed everything we needed ready. Other chidlren slowly nearing school readiness. 7.45 and no sign of ambulance...I rang the ward to see if they could chase it up...they were not sure if they could told me to wait ten more minutes and ring back. I tried all the numbers I had but non was answered. School bus arrived and Jonathan and Eve set off to school, carer took, a by now very annoyed, Rosie for a walk down the lane.At 8.10 am I resorted to ringing the mobile number of the phone used by the last ambulance driver to take us. It was answered by a very kind lady who gave me another mobile number for Ambulance Liason. At last I spoke to someone who knew what was happening...the Ambulance crew was on it's way they dont start till 8 am! I was not impressed, we have had ambulance tansport pick us up at 7.30 I nkow thye can start early if requested to do so! Our appointment for Video Fleuroscopy was at 9.30 and it was impossible now to get there for that!
Traffic was not on our side, the crawl to the hospital started a good 10 miles out and it was 10.20am as we walked through the door of the ward. A lovely young Student Nurse met us and took us to a side room, there was no bed there yet but it had it's own toilet and shower and was a nice size room. Rosie headed to the playroom and then we were moved to the rom next door to the play room as it had a bed. For the next hour no-one came to us, no-one spoke to us nothing happened, I eventually went to find someone to discover what was hapening at 11.40...apparantly the Barium Swallow was to go ahead on Thursday morning now! ARGGGGHH!
We had wasted a whole day, got stressed out about the ambulance messed about with other appointments, arranged care staff at home, seen an architect at 7 am and all for nothing! I was not impressed!
A Junior House Officer came to see us just after midday and he too got the brunt of my displeasure! Then the Surgeon came along...he was immediately appologetic admitted it was partly his fault as he had been keen to get the study done Wednesday to enable him to plan what he would do in Surgery, unfortunately the Radiographer had been unable to squeeze us in and so it had been put in place for Thursday am...this was awkward for the surgeon too as he wanted to see the action and maybe request different angles, textures etc etc but nothing had been able to move to get us in. It had been late Tuesday before this was finalised and he had just not thought to contact us. He is such a nice, charming really wanting the best for Rosie sort of guy you just cannot remain angry with him...and he did admit it was his fault and appologise I couldn't really ask for more!
So the day rolled on and on and very few people actually spoke to us and I was very disappointed. Rosie and I escaped to the canteen for some food but there was nothing Gluten free we went to the shops to buy yoghurts and farleys rusk then went back to the ward to request they ordered some from the kitchen. The kitchen did not have anything wheat and gluten free so had to ring the dietician. The dietetics Kitchen only had frozen things that could not be ready until the tea trolley came at 5.30...eventualy we managed to find a baby tin and some mashed potatoe! I requested someone fed Rosie whilst I went to eat...I had eaten nothing but a couple of biscuits since 5 am!
So we rolled towards evening, I went to give Rosie a bath...they have a whizzy height adjustable bath in the bathroom...brilliant...well it would have been had it worked...never mind Rosie was happy once in the water and I let her play and soak clean whilst I watched her...gave her face a scrub and just let her be for a while...I called for help to get her out and looked around the bathroom...hmmm no disabled changing bench...where am I supposed to get her dried and dressed? After around 5 minutes someone came to answer the call bell and then went off to find out how we are supposed to get Rosie out of the bath because we cant lift her..Mr Health and Safety says so! ARGGGHHH they dont have a hosit they dont have a clue about Rosie...can anyone who knows Rosie imagine anyone trying to hoist her out the bath? At last someone with a big of gumption comes and helps me lift her from the bath to the chair and we wrap her in towels and transport her the whole length of the ward back to her room trying desperately to keep her covered! Not acceptable in my view but what else could we do?
Rosie was not convinced by the idea of bedtime. No Safe Space to enclose her in I spent the next few hours trying to ensure she stayed safe and did not get too much attention! So I sat and watched but intervened when she ventured to far away or to near another bedspace. By around midnight she climbed into bed and I climbed in beside her...we dozed on and off until around 3 am Rosie decided to have another explore of the ward...managed to find a box of brick type things that she through along the length of the ward from the Playroom door...amazingly no one came to investigate! We managed to climb back into bed and cuddle for a little while but it was not a peacefulnight.
Day Staff started to arrive and time ticked slowly towards the allotted hour of the trip to X Ray...our nurse had to go off for a computer course so it was someone else who took us down, armed with yoghurt and peadiasure and gluten free Farley's Rusk. As we approached X Ray we met the surgeon coming from there, apparantly the radiographer was not there yet so he was off to grab some paperork and would see us shortly! Hmm interesting, X Ray rang to see where we were as we were late...we arrived to be met by an apologetic young lady who informed us the radiographer was in transit on a bus from City Hospital to the QMC no-one knew how long she would be....so we tried to occupy a rather stressed, hungry, frustrated Rosie whilst waiting...Mr D arrived back also a little frustrated...it was by now approaching 11.15 am and his surgery list was due to start at 12.30, he wanted to see the results of this test to plan what he would do to help Rosie, he had a list of 4 other patients all expecting a brief word with him before they went to theatre and here we are waiting around...or in Rosie's case trying to escape from, X Ray. There did come a point where Rosie did escape and vanished from view before anyone could catch her...cue ten minutes of hunt the Rosie...she eventually popped out of the gents Loo in the corridior!
At long last the radiographer arrived..Mr D had left and no-one seemed to know what was needed an no-one felt I could possibly understand the ptoblem. No-one seemed to think I could possibly know what would and wouldn't work in terms of getting Rosie, camera, screen lined up to actually see the problem either! SIGH!
Having attempted all the options I told them wouldn't work they gave my idea some thought and came up with a compromise..Mr D walked in at just that moment and all was well! I started to offer Rosie barium soaked farleys rusk and we were off...The food sat at the top of her gullet whilst she swalllowed several times then eventually it set off and the rest of the oesophagus appeared normal...the narrowing was very high up...unfortunately that means she really is at risk of aspirating. So, back off to the ward and await what the gastroscope shows.

Keeping Rosie safely occupied for the next 21/2 hours prevented me dwelling too much on the issues...and before too much mischeif and mayhem evolved we were heading to theatres....
I wanted to go see my friends on another ward and also needed to eat...it had been a long time since the luke warm meal of yesterday and so I had little worry time before we were summonsed to recovery! The only way to keep Rosie on the trolley was for me to climb up with her...but once back on the ward she was having non of the bed nesar the nurses station, she literally lept from the trolley and stormed on the direction of her cubicle..wobbling and falling and getting very distressed. Sister grabbed her gown to try and stabilise her a little but Rosie was not going to lay down. So everything was moved back to her cubicle but Rosie was intent at trying to remove name bands and cannula...we gave her some fluid via the nice new PEG and ofered her some yoghurt...she choked a little on the yoghurt but the water was accepted. She ripped the cannula out a little later, managed to tolerate some peadiasure via the tube and set to destroying the playroom. She kept this up till gone midnight when she allowed me to cuddle her on the bed, I think we may have dozed for 11/2 hour before she was up and going again. At 5 am I through her in a bath, climbed in with her and managed to relax whilst she was contained and happy!

Mr D had come to chat earlier in the evening. He was still unable to discover what had caused the narrowing. Her oesophagus was narrowed to under 6 mm at the top end. He had stretched it with a 6mm, then 8mm then a 10mm dilator...the 10mm had been too tight to pass fully. Because he did not know what was causing the problem he could not give us any idea as to whether what he had done would help, not if it did whether it would reoccur! Rather than give us a fixed follow up appointment he has left it for me to email him with updates of how things are. We will wait and see!
Transport home was attemtped to be booked at 4.45 on Thursday, Boston could not get to us till 12.30 so it was provisionallly booked and we tried Nottingham PTS they said we had to book on day of travel and they assured us we could ring at 7.30 am...so on the dot of 7.30 I started to ring. I made 15 calls before I got an answer. I explained Rosie was a child with complex needs, travelled in her own wheelchair, had suction and Oxygen but that Mum was qualified to use it and did all her care.The gentleman on the other end assured me that they would be with us fairly shortly. So when no-one had arrived by 8.45 we rang to check. Apparantly we were next on the list with a volunteer driver! Really? DO the volunteer drivers do wheelchair transport then? Oh no it is just a car. But Rosie travels in her own wheelchair. Oh she can transfer to a seat. No she can't and the wheelchair will not fit in a boot of a car anyway! OH! No one told us that. Well actually I did!
A few arguments later and we decided to ring Boston and see what time they expected to be here. I had to be home for 3.30pm without fail as there was no one available at home to meet Eve off her bus, qualified to meet her needs. IF the ambulance could not get me home for 3.30 then they would have to puton a paramedic crew and take her on her own. I would need to find public transport home.
Ten minutes later Boston Liason rang back to say they could not take Rosie...no one had told them she needed to travel in her wheelchair!
OH YES WE DID!
I was by this time getting so angry! We had no one at home to care for Eve. I checked the times of the trains and rang David to let him know what we were doing. It was 11 am by this time...I had expected to be well on our way by now!

It ended up that David would cancel his appointment and come and get me! If he left there and then we would deffinitely get home in time for Eve and for Him to collect the others.
Whilst waiting for David down stairs the Boston Ambulance arrived. Oneof the Crew was from the crew that took us to Nottingham last time. He too was really cross on our behalf. He had insisted to the liason office that Rosie could not transfer, but rather than check it out they had ignored him had they taken note at 8 am this morning something could probably have been worked out!
We eventually arrived home at 2.30..exhausted but pleased to be home! We have a nice new Freka PEG. We will enjoy and hopefully protect that!
We have lots of unanswered questions, we will just have to live with the uncertainty and hope and pray Rosie is not at too great a risk.
Thanks for all the prayers for us this last week.
Eve's turn now. Hospital on Thursday to see if we can make her Brace work for her back. Then next week we have the neuro follow up.
All Prayer apreciated!