A Week On! (this may take a week to read)

I know I ought to post. I knowI owe a lo ofpeople a huge thank you for prayer....please take this as a huge thank you for your prayer if you have prayed for us this week! God has made His presence felt in ways we could never have imagined! Our assurnce of your prayers and the tangible love and support that has brought to us is beyond words.

I left home full of concerns, both for me and Eve but also for the rest of the family at home! Sarah and Grace were there to help, I knew they would all work together and rosie would be safe until her transport collected her but I was concerned about David...he had anxieties he rarely voices. being worried and tired and alonei was concerned about him getting over cross, or not seeing the children's point ofview or...or...or...

The roads to Nottingham were amazingly clear, I arriveda the hospital within 1 hour and 40minues which was good going! unfirtunately findinga parking spacewas not so simple. hving drivenround the whole hospital campus unsuccessfully, I tried by the main entrance one mor time and there was a space! Right by the door! Praise God! Answered prayer forsure! I remember a similar prayer for parking when Jonathan was in Cardiac Intensive care in Alderhey and a similar scenario! God watches even the smallestdetails of our lives!

Arriving in the ward we were greeted by a bubbly nurse who was immediately won over by Eve's smile. she hurridly found us a SATS monitor as mine had given up on route. Paperwork completed a meal arrived forme. The staff nurse dealing with the children'smeals had realised I had travelled some distanceand knew lots of Doctors were linedupto seeus and had managed to create a meal from the children's trolley for me! Salad and pasta bolognaise and a fruit salad! YUMMY! It was much appreciated and our bubbly nurse sat and cuddled Eve whilst I ate!

Doctors came and went, my worries and fears were allayed to some degree and others were given validity. Onejunior Doctor was very interested in our concerns for arnold Chiari Malformation,having just done his neurology round he was keen to follow her through. Having gone and spent time looking things up on the internet he camebackand wanted to talk and look again. he was very nice but i did think he went off hoping the MRI showed he had found something interesting.

Sunday night passed, of course the sleep study did not show her at her worst, however it did show some significant desaturations. The report was brought up to us the next day by a wonderful peadiatrican with specific interest in respiratory disorders. Having lookedthrough the report he was very pleased to see her asleep and hear the awful noise she was making. I told him of my concerns prior to admission of being sn to be exagerating her difficulties, he laughed! he told me I would find it quite hard to exagerate the difficulty he could see and hear for himself! I was not sure whether to be worried or comforted by that comment!

So Tuesday dawned and aneasthetists came back to see us. i old him I was most afraid of her coming back with a tracheostomy without us bing able to prepare for that!
he was able to reassure me this would deffinitely not happen. I felt muchmore comfortable about the whole surery at that point. My worst fear for the moment was taken away. We had two of the consultant Peadiatric aneathetists were taking care of Eve,and one, who already knew us, knew Eve and knew our past history was going to be accompanying her from the theatre to the MRI scanner and back to PICU. We felt at ease, or asmuch at easeas possible before surgery.

Th Anesthetist left and soon aftr the consultant ENT surgeon came by. His first words snatched away my safety net! The MRI wasnot going to happen today! They had tried really hard, had reallypushed th case for this happening under one aneasthetic,had ried every which way but they could not arrange it during this GA! I was totally devastated. i really needed to have the prospect of Arnold Chiari Malformation to be dismissed categorically once and for all! without the MRI whatever the scope and possible removal of tonsils and adenoids proved, it would not prove that Arnold Chiari was or was not there! They were very appologetic and very understanding,that did not help my despair though! When the surgical team came to tell me they ere all organised for changing her PEG I was barley coherent, I did manage to ensure the pEG was being changed for the same PEG again. With Hindsight, I regret not making it clear we needed the tube to be left as long as possible.
All too soon theatre were calling for her and we made the awful jouney along the corridor! It was reassuring to see our favourite Aneasthetist sat on his familiar stool and ready to put mymind atrest that she was in safe hands. A hug a kiss and I walked away! It was a very lonely momnt despite the comforting arm of ourbubbly nurse around my sholders. First point of reference now to callTia and let her know Eve was intheatre, then a call to Sue and nick with the same message. i did feel very very alone, Knowing for sure we would be heading to PICU it gave me something to do in tidying all our things together and packing ready for the move. Before long it was time to go and look out for David. Oh was it good to see him walk towards me and feel him wrap me in his arms? We hugged again and then went downstaairs to eat. It passed some time and gave me the chance to tell him all that had been said and planned. As soon as we had eaten it felt urgent to get back to the wardand so we headed back. It had been an hour and a half since we left her and so we thought we would hear quite soon.

Minutes ticked on bye two hours, twoand half....the bubbly nurse kept catching our eye and appologising, there was no news. At 12 o'clock she came towards us and I tried to read her face...she was giving nothing away as she made her way towards us.
the ENT surgeon had just rung through, aparantlythe surgeons ha had a problem with the change of the peg...there was no information about that other than all seemed fine now. However because they had taken so long a slot had become available in MRI, the anesthetist assistant had also got a space in her time schedule and our aneasthetist was already set aside for Eve for the shift! So Eve was now on her way to MRI. What further assurance could we have that God was in control? Had the original plans been made the surgeons difficulties would have meant she would have missed her slot....no one could have planned for the slotting together of all those timings forEve to actually make it to the scanner when it was available! Of course this meant that it was another hour and half before we got the call to go to PICU and see her at last! 51/2 hour after I lft her in the anaesthetic room for what should have been an hour and a half!

Eve was still ventilated but was being allowed towake up slowly...she was not keen on the tube in her mouth and was trying to gag it out...however she was not making much effort at breathing and so the doctor and aneasthetist were tweaking the ventilator...I suddenly realised I recognised the Doctor, he had been at our local children's ward last time we were in there. It felt like we were being cared for by old friends!
Eve was soon showing her joy of life. The nurse was trying to suction away some secretions and Eve managed to bite the catheter and grin at her as if to say, now what are you going to do about that??? Very soon all who were in the area had fallen in love with our little girl, her smile was just so bright and welcoming despite being in some considerable discomfort and amongst many people she did not know they all learnt how much life is one big joke to Eve.

lots of little issues were happening over the next few hours, Eve's blood presure was on the low side, there was no sign of a wee. her temperature at first was very low forEve but suddenlystarted to rise...not alarmingly high but quite rapidly from the low temp she arrived with. she had been dosed upwith pain relief which would have tnded tokeepher emperature down too. It was all noted but nothing seemed dire enough to actually act on...I noted it all subconsciously though. As she came out of the sedation bit by bit Eve was showing a fair few myoclonic jerks,i mentioned this to the nurse who also agreed. once the ventilator was extubated and Eve was breathing on her own it became apparant the cough reflex wasjust not there. Wekept hoping it may return as she came further out of sedation, she seemed very sleepy still.
All too soon the lovely staff who had welcomed us all to PICU were going home for the night and the night staff were coming in. Having had a realygood relationship with the twostaff all day I found it hard to get the same rapore with the equally lovely night staff....by the morning though we had opened up our conversations. During the night blood tests had shown signs of infection and another low blood pressure had prmpteda fluid bolus, just before midnight she did a big wee and filled her nappy to bursting point almost! That was a relief for everyone! We had been waving a catheter at her since 8pm...the threat had been enough!

I managed to settle to sleep in my wonderfully quiet room, No crying, no beeping alarms no scuttle of nurses feet. I slept until 5.30 and had a lovely hot shower and hair wash...then went in to see her. The oxygen was running again but I could see her last blood pressure was improved.
The doctors had started hr on antibiotics and she had had another fluid bolus. No wet nappy since midnight but a scan of her tummy had not shown an enlarged bladder. It was usual forever to have a really wet nappy at 8 am so I suggested we wait until around then and see if her natural body clock would sort out the problem. The lack of cough was stillaconcern and Eve had needed a fair bit of suction throughout the night.

The two staff from yesterday arrived at 7.30 bright and jolly and pleased to see Eve looking happy and settled. However as she awake more she became a littleagitated and I lifted her out on to my knee whilst they started to do their checks and organise themselves for the day.
We were chatting away about mundane things and I glanced down at Eve and was horrified to find blood was dripping from my lap! Thankfully we quckly realised it was coming from her drip somehow the tube had been pulled from the cannular. Rapid assessment by the two nurses soon discovered that the canular was still patent. A little quick thinking managed us a blood sample before a new tubing was attatched and the situation was resolved......bar the mess!
heading back to my room for clean clothes for Eve, I realised I was covered in blood too and I had to change my trousers and have a quick wash.
All was soon cleared up and Eve lay looking pretty by the time the doctors did their rounds. We expressed concern that although the breathing problems had improved they had certainlynot gone away. The loss of cough was a concern and there were also concerns about the blood pressure and infection markers. It was a agreed Eve would need to remain in hospital and maybe have a repeat sleep study. If she continued to make improvements she could maybe go back to the main ward later that day. Secretly I would prefer she stayed where she was,bt of course PICU is for the sickest kids and if they needed her bed then we had to move!
David arrived with Joshua and Christina...they were all pleased to see us and Christina became a bit of a cling on, to me for a while.
We went back to the ward just bfore lunch....it was at this point I realisedI had mislaid the key to my bedroom! OOOOPS!

The day rolled on. My concerns about the less intense nursing care were realised a few times after returning to the ward, the staff were lovely but over run at times and at others just not observant enough. I was left to do the suctioning and O2 decisions by myself which felt like I had been abandonned at times. I was very relieved to see the physio inthe afternoon a little while after David and the children left. Someone esle to see the problem of her lack of cough. someone else to see how much gunk we were sucking from the back of her throat with no other sign than the noisey breathing and pleading look in her eye. Eve had learnt how to tell me she needed suction and would point to her mouth and say more! Unfrtunately the staff did not pick up on this. the day rolled on towards the evening, No one had been to say anymoreabout the sleep study and so at half six I asked the nurse caring for us what time they were going to be starting the sleep sudy as Eve had fallen asleep already and to get and acurate nights picture I really needed to wake her. Iwas moe than shocked o discover that the sleep study was not happening!
Apparantly discussions between ENT and respiraory had decided that it was not sensible to do another study immediately after surgery!
I was very angry that I had not been a party to these discussions, why did I not discover these decisions until so late in the day? There was only a vey junior ENT doctor avai lable to speak to and he was very obviously out of his depth.
The night was long, several desaturations below 80% had me jumping out of bed...much to the horror of my very painful feet! at last Thursday dawned proper and a shower left me feeling almost human.
My first visitor of the day was a les junior ENT surgeon who appologised for our lack of information. He told me that the MRI scan had been given a preliminary report but was awaiting full report and a referal would be made to a neurologist for further clarification.
apparantly all that was available for now was the fact that there were abnormalities!
my nextvisitorwas a registrafrom surgical. telling methe PEG was eventually changed successfuly. They would send follow up in the post!
Next to visit was our wonderful anaesthetist, coming totellus how amazing it wasthat all fell into place...we assured him it was the power of prayer! He agreed!
Follwing closely on his heels was the consultant ENT surgeon. He was concerned that the breathing issues were not resolved but wanted to hope that as healing occurred things might improve. He suggested tha follow up with the respiratory eadiaricianwouldbe a goodidea and then a repeat sleep study could be instigatedif necessary later on. He felt that he had done all he could and anything further was not due toENT issues. I aked him about the MRI and he said that the report was available but for him to try and understand it was like asking a plumber to look at your fuse box! He said that he would email the report to Rosie's neurologist, and ask for him to accept Eve. he also agreed to talk with the Respiratory Consultant and get him to see us before we left. He would then come back and formally discharge us if Eve was well enough at 1 pm!
I decided to start pckingour things and taking themto the Bus. At this point i dicovered mykeys were missing! After checking through every bag and lockerand drawer I remembered David had picked them up once yesterday and I had told him to put them down. A phone call to him soon established he had indeed taken both sts of keys home with him! I was stranded!
I tried three options to find somone able tobring the keys tome...David had all the other chidlren and both Joshua and Christina had things happening, he would not be able to leave home before 5 pm to bring them to me.
It thus transpied that Nick, our minister was with me just an hour after a neurologist had come and shownme the MRI scan and report. The discovery made on this scan has left us reeling! They did not find Arnold Chiari Malformation, however the changes they did find were pointing towards progressive happenings, this puts a whole new light on recent events, and on things we have witnessed and been unsure of! The neurologist was fantastic, very kind, gentle but honest!
He took methrough the scan pictures and tried to explain what each lesionmeant...I dont really remember the whole of it...i was reeling by this time.
we have thousands more questions than answers. he keptasking me if I ha any qustions, I told himI had hundreds but knew right now he could not answer them....he left me with a copy of the report and went off to try and get a CD of the scan. sadly that was not available immediately.

Shortly after he left MrENT surgeon cameback and toldme that he had emailed our neurologist and he was happy to accept Eve but could not see her at Rosie's appointment as the clinic was full. He was pleased that the Neruology team had been to see me and felt happier that we were not being left with no answers. He was stillwaiting to talk to the Respiraory peadiatricianbut would do so as soon as he could.

The physio came back soon after and having the curtains pulled round the bed to talkwith her was good! I found myself struggling to take everything on board...there were so many unaserable questions, we have to wait for more investigations to know exactlywhat we are facing, but there are no good answers! My heart was flailingto accept that God's hand was in this....and then Nickand Grace arrived and I realised that God had a hand in David's taking of my keys....how else was my comforter going to be there? Wewent off tothe canteen for a drink...knowing Grace was sat with us I somehow managed to talk through some of my thoughts at Nick rather than with him...he is a great listener! I amazedmyselfwith my conrol of my emotions, I was very conscious of not frightening Grace and I am sure had I for one minute allowed myself to give in to the despair reeling within me I would have howled for hours! I still have not allowed myself that! Although I came close once back at our local hospital and talking with our peadiatrician! My Concern for how this affects others has protected me from my own emotions for now!
lastlyonthursday we had a visit from the respiratory peadiatrician. Once again the compassion and honesty of this man held me together. His offer to take us on if that is what we want ultimately and yet his asurance that the peads at the hospital from whence Rosie's neurologist comes were well placed to meet Eve's needs was really reassuring. He assured me too that my shock and unanswerable questions were totally normal and to be expected. At no point wasI made to feel I was over reacting.

And so at last we were on our way home, it was late, I was tired, the traffic was good for the most part with only a half hour delay round what had been atttrocious road works earlyier inthe day. Arriving at the end of our road i wanted to turn around and run away! In fact sostrongwas my fear of getting home to relay all ofthis toDavid I ended up on the phone to Nick! I m sure I have abused our friendship over recent weeks...and yet he and the whole family still welcome us and offer us their strength to help us when ours is failing! And of course they offer us their prayers....and prayer is my souls sincere desire!

So that was our week! Our aim for now is to try and appeciate our family, to live each day to the best of our ability. To try to keep life as normal as we can. it will be towards the end of Augustbefore we get to see the neurologist as he is away for 3 weeks now.

So we have our holiday to look forward to. Eve is slighlty weaker i think, but still keen to enjoy life and be ou and about....allour quipment needed to keep her safe is portable! we have back up...we are holidayin within easy reach of all those involved in her care.

God is good. He has shown us ime and again this week how He is in control ofthe big and the small details of our lives. Trust and Obey!
God will be glorified through even this if I will let Him
this is my request for your prayers.....that He will show me His will, Teach me His way and that GOd will b glorified!


Thanks for prayer offered and promised!

hugs!