Breathing Is Good or so I am told

I am stealing a phrase from my friend Trina there in the title...checkout Jophie's Jungle.

In our instance though it is Eve that needs to realise this basic fact of life. I aswoken by her rather loud impersonation of Darth Vader on Wednesday morning around 3 am....coming down to sort her out I turned her repositioned her turned her back and eventually settled her peacfully ack to sleep on her left side....thisis often the only position she sleeps safely...she didsettle and I headed back to bed...at 5.30 I could hear her again so went back down and having repositioned her head/neck I left her dozing whilst I sorted a load of washing and filled the dishwasher and made a coffee. Bythis time i as almost 6.30 and the rest of the house was waking . Rosie was in respite which alwaysmeans the morning is more relaxed, so I mde David coffee, made ham sandwhichfor Jonathan and then sorted Eve's first feed. Eve isfed via a gastrostomy and pump, We aim to get 600-800ls in her in a day but she tends to build up a lot of wind in her tummy that we need to aspirate regularly and if she is uncomfortable we hae togive her a rest. it is quite difficult to time things rightto gt the optimum feed in. We thereforeputher first 200 mls on before pre school, it was whilst rolling her to access her gastrostomy that she decided that breathing was just too much effort. Telling herto breathe whilst rollingher back to her left side worked.

Once attatched to her feed I left her to get on with chasing after the others. By 7.30 everyone else was well nthe way to being ready so I started preparing to wash and dress Eve. I was a little concerned that everytime I moved her shestopped breathing, whenevershe was not resting easy on her left side she sounded like Darth Vader...I thought perhaps I best not send her to preschool in this frame of mind and reminded her several times that breathingwas not optional. it was at 8 am when I laid herover my lap to brush herhair andshe stopped breathing andwent fairly blue tinge that I decided maybe it would be a good idea to ge her checked over at the doctors....the Darth Vader noises were getting worse and the optional breathing more frequnt so I rang the Drs Surgeryand requested an appointment...having given the description of Eve's behaviour they were able to fit us in....

I rang nursery and let them know and then lft eve at home with Daddy whilst I took the others to school. Then came hom totake Eve to the doctors. It was when we put her in her wheelchair to getinthe car that we realised quite how difficutl her breathing had become. It was not easy to keep her breathing whilst sat up...I was gladI had decided to go to the doctors 4 miles away rather than the hospital 12 miles away.wemade it but shewas visibly tiring by the time w gotin the waiting room.
Whilst the Doctor was examining her she stopped breathing several times and was really struggling he felt it woul be best for her to be seen on the ward. I was telling him I did not feelhappy taking hr to the hospital on myown, would it be possible toget an ambulance topick us up from home. when I became aware he was alreadytalking to ambulance control having rung 999, he loked at me as if I had two heads as he said an ambulance would come to the surgery! at this point I ws still not really concerned about her however seeing how concerend the doctor lookdand sounded whilst talking to ambulance control I thnk I became aware of the seriousness of the situation....this was not eve needing her position altered andhead lifted to remind her to breathe...this was Eve stopping breathing and needing vigoraous stimulation to start again. Ironically as concernnd anxiety took over I lost all sense of priority and became stupidly concerned about thefact that my car ws in the car park and I had the only key. I rang our minister from my Mobile phone and briefly xplained my predicamentasking if he could take David to collect the car. He sounded confused and anxious and a bit panickedashe tried to graspwhat i wanted and what I was saying. (in reality he was apparantly trying to think through the what ifs if things went badly wrong.)

Anyway we eventuallyst off to the hospital and hada very exciting ride whizzing past the traffic with our lights and sirens blaring....still I was incredibly calm. Eve was not ill just didnt want to breathe...just a minor technical hitch! I was thiknng welleough however to text and then ring Tia...my great prayer warrier.
A public much needed thanks to Tia for always beingthere to listen tomy heart ache fears and anxieties and to plead forme before God's throne of Grace! Tia I really do thank you with my whole being for your faithful prayer and love.

Not only did Tia promise to pray for us, she also put out an alert on special kids and subsequently on her blog too....please go check out Tia's blog it is on my list of favourite places...behind the child......keep Tia and her girls in your prayers...particularly right now as Mog is struggling with her epilepsy and had a prolonged seizure today.

Well Eve arrived at the hopspital and everyone greeted her as a long lost friend...each and every one commented on the fact it did not look liketheir Eve...she was pale and obviously tiring fromthe effort to breathe.

The junior doctor that frst examined her experiencedher best efforts at apnea however the more senior Doctor who came a little later seemed less convinced...asking me if it was normal for Eve to do this....I found it rather isconcerting to be uable to get across thepoint that Eve did experience breahing difficulties in certain positionsbut that changing her position and ensuring her neck and head were supported well was usually enough to ensure a good breathing pattern, this consistant difficulty with breathing and noisy breahing was very abnormal. She maybe like this with a chest infectuon when chest physio and suction help,however she did not appear ill there was nothing to suction and the noise and difficulty appeared to come from her throat not her nose or chest. Still he kepta sking though is this normal for her to stopbreathing????
Eventually chestx ray and bloods werearranged and then herconsultant came in...at last someone who knew her and could see and understand what I was saying. She felt that it was deffinitely an obstruction within her upperairway, she wondered if an ENTsurgeon would be useful....i wasvery sceptical about his suggestion fornose drops but prepared to try anything.

by the end of the afternoon Eve had IV antibiotics, oxygenand full monitoring...wewent homeleaving her with staff who we trusted.
Over the lasttwodays eve has gradually improved and although still a little noisy sheis maintainingher airway and has tonight come home....We are now awaiting an urgent ENT referal and meantime have Eve attached to a Saturation monitor.

Thank you to those of you who have visited my blog from Tia's and those of you whomwe know personally we thank you for your prayers and thank God you were urged to pray for us. We continue to covet your prayers.
with much love
Tina