Another Hospital Visit.

Paediatrician this time for Rosie and Eve. There are lots of concerns around both girls, they both have signiicant health issues and each of those issues is causing us concern. I wrote a list for each girl before we left home trying to sort out what needed to be talked about now and what we could leave for now if time became an issue. Each child had her own side of A4. THe last minute efforts of leavingthe house in the morning always take us from feeling all is under control to making a mad dash in what seems like 2 seconds! How can the hands of theclock move from 20 past 8 to 20 to nine in 2 seconds?

Anyway as we pulled off the drive at turned 8.45 I thought we were more or less organised. HRMMPGH so how did we arrive at school with Christina's hair unbrushed? No worries the bell hadn't gone so managed to brush and tie it back in the playground! We were soon back on the main road and heading towards the hospital. The hospital carpark has undergone some changes over the last few months, unfortuneately this has not included increasing the disabled parking.However arriving before 9.30am does help with finding a parking space and we were soonoffloadng girls,Oxygen, suction, feedpumps bags, notes.....ummm nnotes......uhhhh what did I do with mynotes???? Guess they are still sat on the settee then???? ARGHH!

We arrive in avery crowded clinic to discover that we are 30 minutes early and clinic is running late....I feel a coffee coming on! Once over inthe main hospital we spot the wish upon astar charity stal and have to go buying! If finds a new baby and Rosie a noisy steering wheel thingy! Both girls happy bethan and I revived with coffee and shortbread we head back. CLinic is busier than ever and we have to letRosie loose and leave her chair in the outer hall....not a problem at all but trying to organise Eve in a comfy stillbreathing reach her feed position is a little more tricky. Eventually we organise ourselves and get ino conversation with other parents, and the staff who as usual are absolute gems. Looking at the notice board I spy that the surgeon who looks after the girls feeding tubes is due in clinic. THis is helpful as there is a distinct posibility eve may be facing procedures under general anaesthetic I want to ask if he willconsider using that opportunity to change Eve's tube rather than wait until it is due a change.

we eventually get called in to see our Doctor and I manage to recall most if not all of the important things I want to discuss about Rosie. First and foremost is the epilepsy. We are really concerned about Rosie's seizures, there does appear to be a bit of a pattern, but also there is episodes of irritability that we are not certain is linked to non convulsive epilepsy but also feel it is a distinct possibility....it is so hard to know. what we doknow is that it is making her very un happy a times, her quality of life is deffinitely affected byt these episodes....however her quality of life is also affected by the side effects of one of the many drugs she takes...we are feeling very uneasy about the seeming unending increasing ofdrugs....when it makesapositive difference it is dramatic and fantastic and we have a happy settled affectionate little girl back....those times wefeel it has ben worth it.....other times when Rosie is sad, agitated, aggressive. when those things make her appear to others like an angry ball of aggression, it is lesse asy to see the good in her life. Of all the many healthissues we have faced and continue to face with our children non causes me so much anxiety, uncertainty, and drains my confidence as much as epilepsy.

With further discussion, a weigh in and a check of last noteswedecide that one of the drugs, the one that has made the most positive change with least side effects, can be increased, one increase now with scope to increase again in a fortnight if needed.
We go on to discuss two other issues and then move on to Eve.

Our biggest worry with Eve is of course her new and deeply concerning breathing issues. Having discussed these issues at length with a close and trusted friend we had reason to look into a possible diagnosis that would tie in some of the significant changes in Eve over the last 18 months. I really felt this was a highly unlikly answer but once looked into it opened some thoughts and ideas and had me wondering and I needed it to be oficially ruled out. So with some trepidaton I mentioned it to Dr C. She looked at me with what I can only describe as glint in her eye, whilst saying i was something to bear in mind, she talked about the possibilities of GA's toarrange an MRI....I was a little shell shocked....wrong anwer DrC, you were supposed to laugh off the possibility and tell me there was no posibilty! we both grasped at the more hopeful posibility of ENT discoveing something easily fixable on Friday! we have to travel to the children's unit in Nottingham on Friday and wait to hear what they have to say.
athis point Mr D walk in tosay hello...he agreed that if Eve needed a GA the he would do his best to combine with them to replace her PEG at the same time.

Weights measured and other less drastic issues discussed we left to head Rosie back to school.

Tonight I am still reflecting on the discussions. I never got the courage to discuss the one big question about Rosie, I didnt get the answer I wanted about Eve. I do know that I can go back and discuss Eve with Dr C after Friday. We also have a neurology appointment at the end of this month for Rosie. Idont feel as though anything has moved forward the cement mixer in my head is still turning.

i think I need to grasp hold of some scripture here.
Isaiah 30 is a good placeto start....thanksTia

Verse15

.....in Quietness and trust is your strength!