Help Harry Walk Fund

Day 5 (post op day 1)

Last night was a long one with Harry being unsettled so not much sleep especially for Mum and that carried on to the early hour’s i had to sleep in the family room and was grateful to have a recliner next to the 2nd loudest snorer in the world (Hi to Mark Jacomb and family if your reading this) Harry awoke about half six and we did all we could to pacify him thank godness for Mummy’s made up stories.

Harry managed for the first time in his little life to wiggle his toes this morning i know this may seem trivial to some but for us it was amazing and the first sign of something new and less than 24 hours from the operation. Harry had a good morning and was talking and for as long as it lasted I felt I had my son back. Any parent who has to look at their child looking limp and motionless and hooked up to a variety of monitors will know what I mean you feel utterly useless and you want to cradle them in your arms but you cannot for fear of hurting them. Harry then found he could turn the tv over by a remote control on the bed and he was happy as Larry. a visit from Dr Park lifted our spirits too. Harry even found time for a skype conversation with our friend Gavin, we managed to get him to drink and suck on some ice cubes all good. We then got the nod that Harry was being transferred to Floor 12 where he will spend the rest of his stay. Once settled Harry crashed out for 4 hours and then woke had some drink through a straw and some jelly then he became a bit humpy no remote for the tv in this room so we was in big trouble nothing would settle him so we had to let him tough it out himself. He stayed upset for about half hour then fell in to a deep sleep and its now 19.25 St Louis time and Harry remains asleep…Time to sign off.

Day 4 (Operation Day)

Harry was up early this morning 4.00am so no need for the alarm i think he sense’s something. One thing we have done with Harry is try to explain to him what is going and explain it in a way that does not scare him. We made our way to the sixth floor of St louis children’s Hospital at 5.30am a quick 10 minute stroll from our apartment and was shown into our private room our home for the next 6 hours then to a ward for another medical and a chat about the procedure. Everybody here puts you at ease and are so caring it is so different ! Harry had to have some medicine and after 10 minutes he was relaxed and we changed him in to regulation pj’s. Then at 7.35am the part every parent dreads…. A slow walk to theatre and then we say our good byes lots of cuddles and kisses and the tears flow from me and Shane but only when Harry can no longer see us and more come when we can no longer see Harry. Now we have put Harry into God’s Trust and the hands of Dr TS Park who will weave his magic with his skilled hands and change our precious son’s future. Now the waiting begins……….

At around 10.30 am the man himself (Dr Park) came in and said how well the operation went and we felt good and Shane managed to put some tears on Dr Park as she hugged him. We waited another hour then we was able to see him in recovery. He was crying which we did not expect but we was told by the nurses that they was trying to get his pain under control so they upped the amount . Harry’s mum Shane held his little hand and did all she could to settle him and managed to reassure him and he started to rest. We then moved up to the intensive care unit where Harry will stay for about 24 hours . He has pain relief drugs on the hour and all the feeds are in to his legs he is laying on his back which he hates but has to stay that way for at least 48 hours because of the incision on his back. One of us will be able to sleep with him and one of us will sleep in the parents room and we can swap when we want. Its 17.20 and Harry has woken as I type and he is upset oh dear.

Day 3 (Monday)

We all slept better and Harry woke around 6am we had a nice quiet morning as the anticipation builds towards finally meeting Dr Park and his team. The good news is that Harry was passed fit for surgery and he will be first on Dr Park’s list with surgery scheduled for 7.30am St Louis time we have to check in at 5.45am . What can I say about Dr Park and his team apart from fantastic professional people, everything Harry is going to go through tomorrow was explained to the last detail we had four meetings with different team members including Dr Park and they gave us so much time and did not rush us and Harry was as good as gold  being examined and put through his paces. The culmination of the last six months hard work is about to be realised and it still feels so surreal for both me and Shane. To everybody that has helped us get to this stage Thank you so much from the bottom of our hearts, this is about to become so real and not a dream we owe you all so so much xxx