Another Hospital Day!

The day started this morning at 5.15am....well if you could really say Thursday ever really finished...not the children so much but David and I unable to sleep.
We must have gone off to sleep though as Iris called up at 5.15 and we had to make haste!

Coffee, bags packed, clothes chosen and snacks bagged. Joshua wanted us to call him before we left and to open his cards. So we called him and began getting the girls in their respective wheelchairs.

Rosie's preperation for the surgery was Picolax...a powder mixed with water divided into small doses and given with regularity over three days. It;s aim to empty her bowel and enable the surgeon to have a good view. It certainly produced much pooh! Clever girl timed a big explosion in school....SORRY! Then had several increasingly watery explosions afterwards....this morning she had again passed watery stool and we changed nappy and headed out to the bus.
Getting organised and loaded and off the drive took longer than we hoped and it was gone 6 before we set off. We were supposed to be on the ward for 7.30am and this was off the cards before we left home, but hopefully they wouldnt mind too much!

We were amazed by the amount of traffic on the road at that hour...expecting to get through easily and even to find parking simple we were taken aback by the number of lorries and then once arriving at the hospital even more suprised to see the disabled spaces by the door either full or blocked by a delivery lorry. David pulled up behind the lorry and we unloaded the girls in the hope the lorry would soon be on his way. He was still unloading once the girls were off and the bus closed up so David got in to wait whilst I headed off to Ambulatory Care with the girls to book in and appologise for being late. It was fine! they were not tapping their toes in impatience and were very happy to show us to a large corner of the day ward and tell us to make ourselves at home. Sister was absolutely lovely, so kind and caring and not a hint of patronising yet making us really feel that nothing would be too much trouble for her. I tested this out immediately as Eves Sat's probe had given up on route so I asked if we could nab the one she used for Rosie rather than it being binned....she not only gave me that one but fetched me two more brand new ones from the cupboard.!

Once left to our own devices Rosie found some interesting books and I set about putting Eve;s feed together. Just as I wa hanging everything on her Winnie the Pooh bag a nurse came up, clutching thermometer and Sats monitor and notes....OK then , Which one of these is Katy. feeling more amused than than anything else I looked up deadpan and said neither....I have five kids and non of them are Katy sorry! Poor Nurse looked terribly flustered and shuffled off. About ten minutes later after David had joined us another young girl came over and introduced herself as an Aneasthetic Doctor..we sat and chatted about the upcoming surgery, and she looked back through the notes and said she could see Rosie was not a simple case, she assured me she had a consultant working with her and that Rosie would be in the best hands! We discussed various aspects of the surgery, and recovery, and decided between us that if Rosie became agitated again we would treat it as nonconvulsive epilepsy and give Clobozam, she laughed at the mental picture of Rosie jumping off the trolley as she arrived back on the ward last time. I signed the paperwork and she tootled off. Another Nurse came over to book us in and took temperature, heart rate etc and then Dr C arrived. He went through the bits and pieces e had discussed last time, he asked us to sign the consent form again as they had added a new PEG to the list of things to do. That was a nice suprise I was not sure they would try again. We were asked what type and size of PEG she needed/we wanted and they agreed to do their best to oblige. I made sure it was noted on Aneasthetic sheet consent form and surgery sheet to leave it at it's full length not trim it.....we need to be able to tuck it out of her way!

Then we were given the explanation of why they had wanted to cancel her for today...our surgeon was not available, so another surgeon was going to come and put the PEG in and Dr C would do the rest. Howevr because they needed the consultant aneasthetist and the surgeon Rosie would be last on the list so e would have a bit of a wait! OK so we had had the opportunity to change and had not been prepared, so we had little reason to complain about being last. Always a pain though to have to be out the house so early then spend 4 hours hanging around the ward! It wasnt so bad though as staff were brilliant and we had the Hospice Worker coming to do the girls care plans too. The time passed reasonably well. Rosie was eventually called for at 11.30.
She was brilliant, it weas made very much easier byt the theatre staff listening to me and taking my word for what helps and what doesnt, Rosie went off to sleep with minimal fuss.

Once back on the ward I realised I had left my mobile in the bus...so we went off to fetch that and have some lunch. I felt incredibly at ease...the staff had made me trust them and I know many prayers were being said for us all. I really did feel at peace!
We enjoyed lunch and then meandered back to the ward. We just had time for a coffee before the Sister approached us laughing. They have just rung from theatre and asked if you will go down to theatre's rather than recovery! Rosie is still in theatre but just about ready to move to recovery. Had she not been so terribly amused by the whole situation i could have been panicked by this reuest, as it was I was intrigued! It wasnt long before I realised the proble,..Rosie had attempted to jump off the trolley before leaving the theatre! She as awake and up and raring to go...several people had been required to remove her legs from around her chosen levarage body. Keepig her on the trolley had proved extremely difficult and when determined Rosie can do a very good impression of a boa constrictor! She calmed a little for a short while and accepted some oxygen...not for long though and she was throwing herself off either side of the trolley into the arms of waiting nurses or myself...it was quickly decided that recovery was not really the best place for her so porters were called Sister arrived from the ward and I climbed onto the trolley to hold Rosie for the short journey back to the ward. Once there she launched herslef into David's arm and then after a short bear hug she was sliding down him to the floor, where she wobbled and shimmied across the ward. Refusing to be constrained it was a case of close contact to keep her from falling. She very obviously had some abdominal pain in spasms and we gave her some water via the new nice long PEG and released a massive amount of air...hoping this would make her feel more comfortable we sat down to read stories, but Rosie got more and more agitated and eventually we gave her some clobozam and she settled for an hours sleep on my lap. She woke really cross...obviously in pain again but would nt let us get near her, she pulled chunks out of my hair and shredded my face and chest with her finger nails, bit me several times and would not be comforted at all. I ended up in floods of tears, frustration at not being able to comfort her, embarassment at the onlookers in the open ward and a culmination of the stress and emotion of the last week.
Thankfully a little while later the Doctor arrived on the ward and once we reached the top of his pile we were able to talk with him about his findings.

Apparantly the top of her oesophagus is very tight...the scope was very difficult to pass through there but once it did then it moved easily down and there was no inflamation or disease visible to the naked eye, again the stomach looked healthy and looking back up at the junction of oesophagus and stomach it all looked really good. Fundo still effective and lining looked healthy. He took biopsies from the stomach and the oesophagus to look for other issues that may not be visible to the naked eye. Then they went up the other end and took a look at and biopsies from her bowel. Unfortunately despite the picolax she still had masses of what he described as brown river sludge in her bowel, he felt this was very indicative of bowel dismotility he felt the lining he could see looked healthy but he took severeal biopsies long the way.

In summary he thinks that dismotility in both oesophagus and bowel are the main causes of her problems. HE thinks that she is a great risk of aspiration and choking, and that the food down her nose is an issue to be discussed btu he is very impressed with her ability to protect her airway. She ahs a good cough reflex and the fact she is not constantly beset with respiratory problems is a good sign. He wants to see us before Christmas to look at the biopsy results and is goig to try his best to combine that with Eve's apppointment with the spinal chap on 21st December, he said it would be his Christmas present to us...he made the appointemnt for his clinic the next day but has promised to do his utmost to see us on 21st.
And so we were free!
We arrived home around 6pm almost exactly 12 hours since leaving. Iris had cooked a roast turkey dinner for Joshua's birthday tea and we all sat down together to eat. It was delicious. Joshua enjoyed every scrap.
We then had birthday cake complete with indoor fireworks and then Joshua opened his presents. A Chess set he had seen on holiday and a talking calculator. One very happy boy.
Two very tired parents and thankfully now 5 tired children sleeping.
Roll on Tuesday! SOOOOOOO looking forward to our respite!
Photos will follow of tea time treats....too tired to upload now.!
Night!