Still no photos

Sorry it has not been an easy week. Thursday's appointments started with a blood test...done! Then a cardiac appointment, ECG, Echo, then sit in waiting room and wait....and wait...and wait. 11.40 appointment and at 1.20 we were still waiting...thankfully the staff know us fairly wel and were really good with Jonathan keeping him interested in their doings..David was pacing the corridor and I was heading out to the doo to cancel the CCN visit and change my appointment and check that there was someone able to meet the girls bus if necessary. Back in the waiting room the talk had turned to football and DAvid was animatedly taking of Chelsea's chances for the premiership...at last we were called in. A thorough examination by the excelent cardiologist and we were sat taking about Jonathan's collapses and what they could be caused by. There was nothing to suggest any cardiac reason, so Dr N was keen to follow it up with an urgent Brain Scan, if this is not conclusive he wants a referal to the neurologist. We left clinic at 2.15 and headed in search of food. The canten had closed so we were left with th option of jacket potato or sandwhich in the WRVS shop...jackets all round then!
We arived home just in time for David to turn around and go back out for Johua and Christina. Exhausted and unable to get our heads around an urgent brin scan the evening passed in a blur!
An early night was essential..we were both nearing breaking point and thankfully everyone else seemed to think bed a good idea so by 10.15 we were turning out the lights. 11.15 the beep beep of the Sats alarm draged me from my bed to Eves, a turn a suction and an adjustment of th mask and she settled again....long enough for me to climb back into bed and close my eyes before bleep bleep....return repeat, back to bed 0 minutes and beepo beep this continued until at 2 am I couldnt get the beep to stay stopped....78% oxygen, swap from ventilator to oxygen and nothing! swap back and 86% turn suction chest physio suction back to oxygen hunt for mask on 3 litres of oxygen 5 litres of oxygen....86% was the best I could get! So ring the ward for advie and they say ring an ambulance and bring her in...so 3 am I ring for an ambulance...it takes 3 minutes to get here good job she wasnt in dire straits!
Ambulance men stay with her whilst I get dressed and off we go...limp floppy grey/blue Eve...slightly stressed ambulance man...Driver sets off up our bumpy lane 5 minutes later Eve gives a cough splutter and SATs jump to 100% another bumo in the road and Eve is giggling loudly! She continued to giggle loudly all the ay and arrived on the ward with a huge grin! Mum feeling somewhat embrassed! Everyone so nice and assuring me I had done the right thing. Eve settles off to sleep on BiPap and SATs remain above 95 all night long.
Doctors round in the morning at 8 am and they seem to thinlk the likely problem was a mucous plug that the rough ride along our track had cleared nicely. Agreement all round she needs humidification on her Ventilator...I have to head off ot meet David and Jonathan as Jonathan has two appointments downstairs....Childrens ward promise to ring down for me if any problems.
Now I have discovered there is a good side to having a child in childrens ward...if you plead sick child upstairs you can get Orthoptist to persuade Ophthalmologist to hury your elder child through eye clinic despite the crowds of people already waiting.
Back to ward then and collect stressed husband who has been faced with a Dr and medical students wanting to do a study on sick child...who isnt as sick as she had been....Medical students in their element as even though we now saw Eve as being absolutely fine as far as Eve's go she is of course a very sick child with a very complex and fairly rare condition...so an absolute delight to Drs trying to train medical students..Dad totally stressed out as he had been asked questions he hadnt got the foggiest clue about....like what is her date of birth....when did she start to deteriorate, what meds is she on...you know the things we Mums have in oindelible ink on the back of our eyelids!!!

So off to take Jonathan back to college and then home to rscue the Carer who had been summonsed in at the 11th hour to care for Rosie as her and Eves school had the audacity to take a training day the Friday before Bank Holiday Monday making it a 4 day weekend just when we didnt want one! A quick cuppa and a sandwhich and I set off back to hospital leaving David on Rosie watch Iris on Joshua and Christina pick up and me to sweet talk the doctors inpo letting Eve home.

Thankfully everyone on Childrens ward agred they werent doing anything we couldnt do and our whole family would be better off if we took Eve home. We knw where they were should she decide to do a repeat performance and they were happy we would come back if needed and so at 3.15 we headed out the car park making it home at the same time as Iris and the kids...PHEW! a long day probably a maximum of 3/4 of an hour sleep since 6 am Thursday and still the evening to get through...bed time was not so easy as the night before...everyone had had their early night so no one wantd to sleep. I eentually made it to bed at 12.15 and at 3 the alarms started again....suction needed and straight back to 98% thank you! managed to stay in bed then till 5.30 when a change of position satisified her but I was wide awake so decided on a bath!
I had to be ready to go out at 9 am as we had an appointment for Christina's glasses in PEterborough at 10.30 then we headed to Tesco to shop...but I was so tired and overwhlemed with the week's events I ended up having a panic attack and we headed home with only half what I needed. once home I collapsed on the sofa and slept...no ieda how long I was asleep but it was 4.30 beofre I surfaced...Iris had to go at 5 so I needed to wake up. Thankfully Saturday was a better night. Sunday was a plod along day, Chirch and then an afternoon doing as little as posible!
Bank Holiday Monday was a Catalogue of disasters! We were heading out to Hunstanton Sealife Centre to collect the erlin Passes...parking in Hunstanton is almost impossible in a high top vehicle...we were eventually directed to the coach park, £6.50 for two hours....Found the Sea Life Centre only to discover that they dont do Merlin Passes...they appologised profusely and let us in anyway...Joshua's camera gae up half way round, then we went for a drink and Jonathan had an episode....Christina ended up wearing the pot of freshly made tea and the cups laid on the floor smashed! David threw a wobbly and stormed off and Iris and I were left to clear up and comfort Chritina.
Home in silence and Clear up ready for some visitors. Eve's foster carers were coming for a visit. David was asleep on th ebed when they came so I had to appologise for him. Thankfully they appreciated the stress we had been under and were very understanding. It was good to see them and spend a couple of hours in their company, they were pleased to see Eve who was by this time in top form for her these days, awake smiling and vocal! David eventualy came down and after a bit of a strained getting to know you again time was suddenly happy and chatty and as if nothing was ever wrong....men!
Christina got on really well with the niece who had come along, and the adopted son was kept amused with hide and seek and colouring, Joshua was happy to talk along woth us and Jonathan came out to say hello a few times. Rosie played around us and kept looking at our visitors with that...I am sure I know you...look she has!
Far too son it was time to say goodbye, with promises not to let it be so long before we met up again.
Once again I was longing for my bed...managed to get there before midnight and stay there till 5 am! WOW a good night last night then.
Today was another mammoth hospital visit. 4 appointments, Joshua and Eve Eye clinic and me rhuematology Nurse and Consultant.
Eye clinic is always a long haul...vision assesment, drops wait for dilation, head into conusltant wait for second lot of drops, check back of eye. When there are two chidlren this is of course twice over....then the verdict.
Glasses are not going to help Eve, her eye movement is almost non eistant apart from when she fits and the eyes point in opposite directions....only they seem to do that even when not obviously fitting too.
Joshua, his vision is detriorating markedly, his left eye has little useful vision at all now, he couldnt see the chart let alone the letters on it...they managed to improve that to him knowing there was something on it but not being able to read it.
His right eye he could read the top two lines and make out with xtreme difficulty the third line first letter, and maybe the second, an examination of the back of the eye showed changes to the macular not previously seen. So he is being referred to Moorfields. Just in case there is something that can be done.
We left the clinic and saw one of the orthoptist, I asked if the one who k nows Joshua was available...apparantly she was in a meeting. Joshua took Eve to the doorway to cool off whilst I went to the loo...when I came out the Orthoptist I wanted was walking towards me...she had heard I was looking for her and come to see me! How loely is that...she may have regretted it as I ended up having a bit of an offload and a cry on her sholder....she went back to talk to the DOctor and came to assure me that they were urgently referring Joshua as they were concerned about the changes.
So we headed off for some lunch before my appointment...after which I tool Johua back to school for his last lesson. Somewhere between the bus and the reception and back again I managed to lose my keys...me and four members of staff spent an hour searching before they were found...in the metal comparment under the drivers seat?????
Then home...the brain is totally overloaded! I am not sure that I am ready to celebrate Rosie's 18th birthday tomorrow! I am looking forward to seeing everyone who is coming to the party, but actually celebrating is not coming easily.

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