A Meeting of Minds

There is a blog to be blogged of last weeks break, it will be a big photogrphic blog...however I havent time to settle to it just yet.
We returned from our break refreshed and settled that we had made the right decisions. We really felt rested....not keen to return to reality!
What a return this week is too. so far we have achieved 5 appointments and cancelled two. Today a brief respite from that before it all kicks off again tomorrow. Just an electrician today I think!
Anyway back to the point of this Blog! Yesterday I had a meeting with Joshua's Hed teacher. there is an unacceptable issue going on at school that he agrees needs stopping. At present I have faith he will put an end to it! I just hope Joshua is being totally truthful in his retelling of events! I know the issues exists but when there is a 13 year olds imagination into it too...who knows? We will see!

Then back home to head off to Sheffield to see Eve's Metabolic Specialist. I had with me the End Of Life Care plans to discuss with him, I hoped there would be a spare body amongst those in clinic to occupy Eve so we didnt have to talk over her head!
The journey to the Hospital was the best yet! we even found the hospital first run round and found a disabled parking space just across the road! Our God is the God of Parking Spaces! Thank You Catherine for that assurance!

So it was only 3 Oclock as we walked into the Hospital and our appointment was not until 4.40...we went for a drink before heading up to clinic to see how late they were running. Having forgotten the clinic letter we made our way to level D where the clinic usually is! Only to find it wasnt! So back to level B and the general Outpatients and thankfully walked to the desk dealing with the correct Conusltant! We signed in and then Eve was weighed and sort of measured! Awkward measuring a child with non straightening limbs on a mat made for Babies under 90cm...rough guess 104cm! Weight now 20 KG...this is slightly worrying as despite a cut back in calories she is continuing to gain weight a little too quickly...this is not good for her spine or her breathing...nor my back!

So back to the waiting room which was very quiet conisdering there were three clinics running. within a few minutes we were called in! It was the Registra who called us and she was keen to hear about Eve having not met her before but heard a lot about her. She was doing the preliminary assesment before we saw the consultant...Eve was rather whiffy at this point and being the perfect mother I had eerything I needed.....back in the bus!!! Clinic Nurse and registra went off in search of nappy whilst Nurse Specialist and a couple of other consultants interested in Eve cam eto say hello...everyone was keen to assist us in making Eve sweeter....by clearing the room and giving us lots of space!!!

5 minutes later and we entered the conusltant room amidst an array of faces! two conusltants, one clinical nurse specialist, one registra, two clinic nurses a dietician...and a partridge in a pear treee???

Everone was bowled over by the change in Eve...noone had ever sen her so awake and smiley and vocal...such joy at the difference the BiPap had made. I showed the pictures of Eve so pleased to see her mask and so settled on it...they were all really glad to see that she was not upset by it...on the contrary really loves it!

We talked through other issues, the weight gain, the dehydration verses drowning problems and the increase in Seizures...lots of planning to address those issues, then I asked if we could have someone take Eve sio we could discuss the big one. There was some argument over who would take her...everyoine thinking they ought to!!! Eventually the Clinic Nurse \Student won!

I was able to discuss with Dr Sharrad the concerns we had about sudden death and the involvement of Coroner and possible Post Mortem...we talkd about other scenario's where further intervention would be appropriate and about what a sudden life threatening event would entail and the prospect of a good outcome from full intervention...by seperating out the situation of sudden collapse in our absence from any other event we were able to come to an agreement on what would be best for Eve whilst allowing us the aftercare and support we would need for the rest of the family. The conusltant also made us a promise that has made that scenario an easier one for us!

We then went off for a drink and something to eat whilst we waited for the other consultant to come...the respiratologist had as promised instigated a multi conusltant appointment where we could all talk together about the issues unfortunatley she got caught up and was unable to be there when we were called in ealier so it was agreed we would head off to the canteen whilst the team present saw their next patient, ( who incidently was the earlier appointemnt that had not showed!) Then we were called back once the respiratory team arrived...so we arrived back in clinic a little while later and had further discussions on the care plans, which everyone is now in agreement with, and the BiPap which eeryone is amazed at...Dr E, Respiratologist asked me to email her the picture of Eve smiling at her mask! It was on my phone so was able to do that immediately! The Clinical Nurse Specialist in home ventilation was also with her and talked throught he mask concerns and promised to continue to seek out a better fitting one, he was also concerned about the settings needing to be tweaked as it seems that the back up breaths when Eve isnt taking breaths are not set quite enough, hence we still get some desatruration without oxygen, we also desperately need to look at humidity as Eve is getting so many nose bleed and has a sore eye. These though are minor irritations in the scheme of the quality of life it has given her back!

We eventually left the hospital at 5.40...Sheffield appeared to be at a standstill...as far as the eye could see there was stationary traffic! It took a while to reach the moroway and then we made good time until a little over an hour from home we came upon an accident! Stationary again! Tom Tom told us there was a detour available 1/4 of a mile ahead...eventually with nothing moving other than the cars turning around, which had brought us to within 300 yards of the turning, David overtook the queu and we turned off....it was narrow and winding but clear! We eventually arrived home a little before half eight...tired but satisifed we had achieved a lot in that appointment! I cant thank the Staff enough for getting so many people togetehr at one time...listening to our concerns and sharing our joys and sadnesses...It was a good appointment!

Eve was awake singing most of the way home, pleased to be home and conintued to sing and shout and giggle with ehr siblings...David and I put her to bed and put her music on and she sang herself to sleep...where she has remained...still sleeping gently, no school today...which means she will be at school tomorrow as we have another array of appointments!

Photos promised next time!