Long Day, But Useful Appointment

Today we had to take Eve to her Multi Consultant appointment at Sheffield Children's Hospital.
Unfotunatley the Respiratory team were unable to be there which was somewhat frustrating. I did get a text appologising whilst we were on our way home and a promised honme visit next week.
The Metabolic Team were pleased to see her looking so well after her long illness in June. Agreed that she has obviously made the dip that goes with each illness and is weaker but the smile and happy attitude were good to see. Eve Smiles on!
Several issues we wanted to look at, She is still having unpredictable Hypoglyceamic episodes but these are fairly easily treated with polycal and occasionally an overnight extended feed. her weight has dropped a little from 20 kg to 19kg, this had been noted at peadiatric Clinic in Boston and now confirmed, we are not too worried at the moment as she had gain an excessive amount in the early Summer and now does look a better weight on her frame and back. Obviously this does need monitoring though.
Her Seizure control is not good. The introduction of Kepra showed an improvement but the reduction of Clonazepam had to stop as the seizure's returned and are quite significant at present. We are going to increase Kepra and see if we can get control again then maybe try reducing Clonazepam we hahve email and phone/bleep numbers to keep in touch.
We were concerned about Eve's PEG, it is leaking and the end dropping off, we have tried trimming it but it seems to just keep reoccurring. We suspected the tubing is perished. Dr S thought so too and called the surgeon who offered to come to clinic as soon as she could and look for herself.
Our other big concern is her back. He Kyphosis is progressing dramatically and the scoliosisat a slightly slower but significant rate. Her position in her chair needs closer monitoring and we are not getting the support from Wheelchair Services. Dr S has agreed to write to the Wheelchair Services stresing the importance of her positioning on her breathing etc!
Miss W arrived soon after and discussed the options for Eve's feeding tube. Everyone agreed that a replacement Freka is the only sensible option. She would like to put in a larger bore which could last 7 years, this is a good option. We were offered a date for this Friday, unfortunately we cannot make that due to other commitments. Then we were offered Next Thursday...Hmm no Joshua's Moorfields appointment. Eventually we managed to find a date we could do, Thursday 28th October. Fantastic. Booked....I will panic later!
So after a trip to pharmacy for the drugs e eventually left the hospital just before 5pm....not a good time to leave a City Centre Hospital, we eventually joined a queue of traffic on the main road that had come to a standstill! We crept along for 3/4 of an hour and went to Morrisons to fuel us and the Car! When we left at 6.30 the traffic was moving a little better and we headed home. The rain promised all day then decided to fall obliterating the view out the front window even with windscreen wipers on full pelt! Arriving home just before 9pm.

Tired but a sense of satisfaction....not going to think about anaesthetics for at least another 3 weeks!
Thanks for your prayers, safe journeys both ways and a useful appointment!
Tina