We headed of towards the Hospice, stopping on route to buy tissues, crisps, sausage rolls and drinks. We arrived at the hospice at 2pm as agreed....to find the staff in handover and we had to wait rather a long time to get the drugs booked in before we could head off to Sheffield. Our arrangements with the ward to arrive at 4pm was slipping away, but thankfully the traffic eased and we did manage to pull into the parking area just before 3.50. We even found the right ward with little difficulty. We changed beds three times before we found a suitable bed with working suction and oxygen!
David took the boys to the canteen to eat before going home. I stayed with Eve and had a guided tour of the ward and then was left to settle in.
Eve was weighed, her care plan written, the nursing notes gone through. I explained about her apnoeas and her suction needs etc etc. Then we changed her for bed and she was attatched to a SATS monitor that would keep a check on her heart rate and oxygen levels all night.
Unfortunately I had managed to come without both hers and my drugs...Eve's main medication is to prevent excess secretions and dry up those remaining...so without this she basically spent the night drowning and needing lots of suction. There were three children in this four beded bay who were on SATS monitors..between them the alarms were silent for only a few minutes at a time and yet the nursing staff seemed totally oblivious. Now dont get me wrong, the staff we did speak with were kind and caring, we had no reason to believe they were not able to do their job adequately aprt from this obvious deficit in their hearing.
I was desperate for food and coffee but felt uinable to leave the ward as Eve was needing a lot of suction and her oxygen levels were dropping drastically to alert me but no one came to investigate. Eventually a student nurse asked me to show her how to suction Eve and then sat with her whilst I went in search of food. I managed a portion of chips and a piece of mushroom and brocoli quiche in a polystyrene container to bring back to the ward but no coffee to be had!
The food was good albeit rather cool but I needed caffeine!
A trip to the parents lounge proved fruitless with three empty cannisters labeled enticingly tea coffee and sugar. Their was a hot drinks machine that only had sweet coffee or milk laden tea...neither is at all palatable! So I took solace in a bottle of Sprite! oh and a box of Liquorice All Sorts!
Unfortunately the hearing of the night staff was no better than the day...although we had a visit from the Neuro Registrar who had seen us in clinic. He had made a special effort to come and chat with us because he knew we would be alone and worried. After a preliminary chat about Eve we just spent a while chatting like old friends...it was very kind of him and more appreciated than he could ever know!
The alarms in our little bay chatted to one another all night. Rarely did a nurse call by, I must have got through 20 suction catherters that night, far more than a normal night and very tiring...and when at half past five in the morning a young nurse told me Eve had had a settled night with her SATS above 95 all night I was somewhat less than impressed and I am afraid I let her know! Being without Coffee for 15 hours did not leave me in a very charitable mood! I was by now desperate. Thankfully another nurse took pity on me and made me a strong cup!
Well the monring wore on and we met with the Anesthetist who thankfully decided that Eve's complexities meant she should not be pushed to the end of the list so was doing her after the other complex recoveries. This was a much better situation than being on the end. We had to have a canular inserted for a glucose drip to avoid any risk of Hypoglyceamic attacks...this was not as simple as it seems as Eve has minute veins...however it was accomplished and before long we were called down to theatre...a bit of a wait for a porter but all too soon kissing her goodbye in anaesthetics...I hate that bit...once your child is aneasthetised you are totaly out of control and you are placing your child totally in the hands of others.
Back on the ward I tidied our bed space and got ready for a transfer to HDU...Eve needed the close monitoring of the dedicated team up there after the surgery and I was pleased we were not going to be at the mercy of the deaf staff down stairs!
Thankfully all went fairly smoothly and a sleepy Eve was transferred to the HDU and had very few problems through the evening... a little suction a little Oxygen and some pain relief and by 11 pm she was asleep peacfully!
Special Kids in The Uk proved it's worth all over again when we had a visit from a very special Mum of a special kid or two...Thanks so much Leisa for your company and your food parcel both very greatly appreciated!
The morning brought a new problem...one we did run into last anaesthetic but had not really considered...Eve had not passed urine.....The surgeon came by and was pleased to discharge her back to the Neurologist, the Intensive care Doctors came and were hapy to Discharge her back to the ward...the ward were not too keen to have her back as they had no beds with oxygen and suction so we stayed put. The neuro arrived and was concerened about the lack of urine...I had by this time rung and told Daddy to come and fetch us as it is a 21/2hour journey and I hoped she would eventually pass urine during that time.....however by 10.30 am she still hadnt and so the decision was made to catheterise her...at least we got the samples we needed! Thankfully no one seemed concerened about her needing to pass urine unaided before we left and so I went off to meet David at the front door.
Oh dear! The car park was full to overflowing, the streets were packed with cars and there was no way anyone else was likely to be able to park. I sent an urgent text to whoever I thought might pray about the situation.,...we needed to park close by. Back came a text from Catherine! Will pray...our God is the Lord of Parking spaces...two minutes later a car pulled out right opposite the hospital entrance and David turned into the road and pulled into the vacated space!
Praise God! It just reaffirmed to me that God is Almighty even in the little things of life! He does have our WHOLE situation in life in His hands!
I do not know what the future holds but I am glad I know who holds the future!
Home again now...still running...next day had to collect Rosie from Loughborough, today Jonathan had an appointment at another hospital and we had some legal stuff to sort out too....it is busy here and lots of prayer needs. Thanks for all your prayers for us please continue to pray for us God knows our every need just hold us up before His Throne!
Prayer Changes things but God loves to hear us comeing to Him in prayer praise and thanksgiving as well as His promise to answer our prayer!
Much love to all of you!
Tina
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