Saturday Special

We had a great day yesterday (Sat) and were allowed to take Patrick out for a walk in his buggy. It made us feel quite 'normal'. Yippeeeee!

Patrick was absolutely over the moon and was cooing away as he was able to see the different lights on the ceilings of the corridors and the sunshine when we went outside. It was a magical moment for us. Then it got cold and we went in again! We were also able to go to the restaurant together and eat with Patrick next to us, something else we take for granted but was special yesterday too.

Gemma nipped out and bought a new cot which will be delivered this week, as we need to get things straight for Patrick's release. (Time off for good behaviour I think) We seem to be on track for him being allowed home this week and there is no point putting him back into his Moses basket when he has been in such a big cot for the past four weeks. It just hit me then that it IS 4 weeks today since this whole episode started. Seems so much longer somehow!

Anyway, Gemma and Isaac nipping to Southampton proper, gave me a nice afternoon alone with Paddy. I was able to feed him (which in itself is a whole routine because he has to be sat with his head forward to avoid him choking) and I got to change his nappy (a bit of planning on Gemma's art, methinks)and then a lot of play too. At one point, we both nodded off while having a cuddle on Gem's 'Z' bed, which was lovely too.

Patrick was obviously tired from getting out in the fresh air and Gemma bathed him before settling him with a bottle. He had his 6 o'clock meds a bit early because once he is asleep it is very hard to wake him and it was clear that he was about to sleep.

I got home with Isaac and got him ready for bed and then got a text at about half eight from Gemma - The Hospital Pharmacy had run out of the Pyradoxil medication which Patrick was due to have at eight!

They eventually located some - at Gt Ormond Street - and it was being delivered asap. I assume that Peter Pan was busy as it arrived by taxi at some time after 12 I think it was. The hardest part about this is that this is the medication that is NOT being reduced or cut out because this is the one they think is actually stopping his seizures. So important is it that it was allowed to run out! Anyway, they have had to write out incident reports and such like so I hope someone gets their knuckles rapped. I was all for going up there and pointing out the error of their ways (Gently, of course) but my wife being the sensible one, calmed me down.

Anyway, all is well that ends well and all that malarkey and he got his meds eventually. In fairness to the Nurses, they did all they could do to locate the Pyrodoxil and contacted the Neurologist at home etc to ensure that he was safe. (Patrick, not the Neurologist!)

I am going to go back to the Hospital soon and will update the blog again later with any news etc.

Love to all from
Martin, Gemma, Ashley, Billy, Isaac and Patrick
xxxxxxxxxxxxxxxxxxxxxxxxxxx