Why is Surgery everyone's favourite word?

oHad a bulk appointment at a big hospital today, unfortunately the first timing was 10.20 and the hospital is approximately 11/2 hours drive away without accunting for rush hour! So first problem is getting the others all out to school. Thankfully Jonathan and Rosie are collected by their bus before 8 am so only Joshua and Christina to sort! There was concern as to whether Rosie would go to school but she woke up reasonably ok, still coughing and yukky nosed but not ill by any means. So battling through the morning regime that is getting her ready we managed to have her on the school bus on time.
Our new morning help is working out great and was more than happy to help out by transporting Joshua and Christina to school so by 8.20 we were on our way, allowing ourselves 2 hours to get there, get parked and find the right clinic!

Traffic was not too bad and apart from the obligatory 40 mile an hour lorry every so often we were making good time an hour into the journey. Then, mobile phone rings! At least I wasn't driving, Respite cottage asking about Rosie's medication. I gave them a run down of her probs over the last few weeks and explained which drugs have changed and said I would send a change of medication drug sheet in on her next visit...when is that??? " she is coming in tonight isn't she?"

OH! How can I be unaware of two respite episodes within less than 2 months? Oh well, Rosie will arrive with nothing but Dad will bring her bag over as soon as we get home, but we are in Hospital with Eve all day. That's ok, so we carry on and manage to be parked before 5 past 10! PHEW!

First appointment is with Spinal surgeon. Eve has a Kyphosis and a Scoliosis these spinal deformaties are gradually worseneing as she grows. We have been waiting for a replacement standing Frame for months! cost is being a bit of a problem...surprise surprise! The one that actually meets her needs is just over £100 more expencive than the one which is totaly useles! The PCT need good reasons to fund the more expencive one! DUH!!!
Anyway, we have to go for x ray and can't actually do that until her notes have been located!
OK we have 2 official appointments and a casual one, one appointment is at 10.20 am the other is at 11 am and the third will be called to see us wherever we are should he be needed! So why are her notes not in the clinic of the 10.20 appointment? Of coure they are in the 11 am clinic instead! OK we all know mistakes happen, but when I booked in I told them we also had an appointment at 11 am in maxilofacial so if the spinal clinic was running late could they perhaps ring and see how the Maxfax clinic was runing in case it was worth going there first! I really did not want to end up missing one of the appointments through sitting waiting in the wrong waiting room! Yes they would sort that! SO when they declare half an hour later that the hold up is due to her notes having gone missing I sort of asumed they had checked Max fax clinic! a further half hour later someone shouted across the clinic! Oh I wonder if they sent Eve's notes to max Fax instead of here? A phone call assures them they had! SIGH!
Then of course the secretary has to toddle off in her mile high stilettos to the other side of the hospital to retrieve the notes! A further half hour passes and we are given the X ray form. Has anyone asked what the state of play is in the Max Fax cinic? Would it be worth us taking the notes with us and seeing if they can see us whilst we are in X ray on the same level? Oh no! Mr G needs to have the notes to make an assessment! OK

So it is now 11.45 and we are headed off to X ray. THe x ray departemnt is VERY quiet! We are seen and pictures taken very quickly....then wait over 30 minutes for the films as first the developing machine jams and then the computer system crashes and then the printer fails...but they have he hip X ray printed and the computer system is backup for the Films to be uploaded! We arive back in the clinic just in time to miss th next slot to the conusltant!
At 12 .30 we are at last sat talking with the surgeon. Ultimately we ae looking at major spinal Surgery, However he agrees that Eve is pliable enough to consider bracing as a slow down measure and see if we gain gain time and growth before resulting to surgery. Her Soliosis has now progressed from 22 degrees in March to 30 degrees in September and now to 43 degrees.
He was concerned about her swallow and the fact that she has so much difficulty lying on her back, he wants us to work on more time on her front and stretching the spine and hips in that position. He has written a detailed leter back to the orthopod and suggested that bracing will be a good starting point and that he will see Eve whenever the need arises in the future!
I don't undertand why he could not refer her to the braceing man there and then but he wants her to be overseen more locally, which does make sense in the long run but do we now sit and wait for the communication to happen between this hopsital and our local one or do we start to hurry things along with a phone call in the morning?
Well as it was now approaching 12.50 we left the Spinal Clinic for the long trek to Maxilofacial. We were coming here to discuss the prospect of botox injections in the salivary glands to reduce the saliva production. Surgon immdiately threw a spanner in our works by telling us that he felt it was not appropriate to do the botox on such a young/small child as it would not be possible to be sure he had actually put the needle in the right place. He would much rather go sraight into removal of the Submandular salivary glands. This was not a small operation and carried some risk of nerve damage!

EEEK! I am not ready to make that big decision yet! We pushed him further about the Botox and he agreed to talk with the radiologist about doing the injection under imagery, we will wait for that answer before making a decision. I also asked about the possibilities of other medication having the same side effect as the Hyocine did, making her secretions so dry that she could not cough effectively! He felt it was an avenue worth persuing so we will discuss this with the peadiatrican later this month.
So we eventually left the hospital at 1.30 sandwhiches in hand hoping to get home at a reasonable hour to sort Rosie's bags for Respite and allow David to take the boys and Christina off to a pantomime we had been given tickets for!

So it is all quiet in this house! Eve has fallen asleep on the floor having had a good time on her front being sretched, Jonathan is happy playing his drums along to the Tweenies Video, (ok so it is not really quiet but there is an element of peace).

I have the water heater on ready to have a wonderful soak in the bath before the others come home!
Oh one other thing, The LGO Officer rang me on our way home to clarify our complaint, he is sending out his enquiries today so we will hope and pray he gets honest answers and makes a good decision! It would be rather nice to know that he house will be adapted to meet the needs of our children sooner rather than later!
Saw a lovely rainbow on the way home tonight
God Keeps His Promises, and that's a promise!

I am still coughing like a 60 a day smoker here. Thankfully apart from being reluctant to go out...in case you didn't guess David only took Joshua and Christina, and being a little tired Jonathan Seems to have escaped all bugs so far!

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