Yesterday we got the news that Dylan's home oxygen was being delivered Saturday between 9am and 1pm so we started informing the relevant people ie. home insurance, car insurance and the fire department. It was all very scary and exciting at the same time!
We had what is now known as 'Basic Life Support' training (CPR) and were provided with a face mask to use in case Dylan needed rescue breaths. We were taught a little more in depth than just the basics due to Dylan's condition so hopefully what we now know could technically keep him alive until an ambulance arrived in the case of respiratory or cardiac arrest. Both of us had basic CPR training from previous work places and we knew the most part but some things had definitely changed including the chest compression part. I like to hope I could do this in an emergency and not panic but it is definitely a scary concept.
They officially stopped his Sildenafil medication as his Echo showed no pulmonary pressure so he no longer needs it which is good news, we noticed his heart rate was a lot lower once it was out of his system which was good.
He had a good physio session in the morning on the soft play equipment again and we went to feed the ducks in the afternoon just outside which was nice as I was gutted I missed out on that the day before!
Our home oxygen supply was delivered today by lunchtime. This consists of 4 large cylinders that last 80hrs each, 4 small portable cylinders that last 16hrs each and a rucksack. We have lots of tubing and information regarding safe use and reordering so it is all very overwhelming!
So.. once we had the all clear we went out this afternoon for a trial run to Wollaton Park just for 2 hours. This was the first time Dylan had been off the hospital grounds in nearly 3 months and it was a bit overwhelming and exciting for him and us too!
It was fun but tough! Dylan was desperate to play on the park but struggled to do much so it required a lot of help and patience plus carrying around a 3kg oxygen cylinder with only 2m of tubing was a challenge to get use to..
He soon got tired and fed up so we got him the Ice Cream we had promised him and had some relaxing time on the grass before jumping back into the buggy for a walk around the grounds.
It was exhausting for me never mind poor Dylan but we must keep going and push to do 'normal' things to help him recover. I did find people were staring a bit at points which made me feel uneasy. I imagine we did look a sight today though struggling and trying to work out the logistics whilst I was waddling along looking like a whale!! Plus the buggy is only small so is not easy to push with Dylan and the oxygen now he is getting bigger. I cannot wait for his wheelchair to be ready and to get the seat attachment for the pram.
He enjoyed getting out for a short bit though and fell asleep in the car on the way back to the hospital bless him! As soon as we got back he did ask to go again tomorrow so that's a good sign I suppose!!
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