Tuesday, 25 September 2012

Monday 24 th sept! A little normality!

Well no blog writing means that we are all good and trying to adapt to normality away from hospital! Harry came home Sat 15 th Sept. I can't believe 2 weeks ago we were awaiting the outcome of the ward meeting as to how to move forward with Harry and get him home! The speed at which life moves is phenomenal at times. The decline of Harry and the state he was in at the beginning of September was hard to witness and get our heads around. 2 1/2 weeks in hospital and Harry seems better than he has been in months! Well since before his operation in April! Harry's dramatic changes in well being can be hard for mum and dad to get their heads around at times! We felt despair very much at times when Harry was really poorly and it seemed the light was no where to be seen at the end if the tunnel, like a bad dream where you are walking through a tunnel abd someone keeps making the tunnel longer and the opening further away and unacheivable. It is scary and you want to scream make it ok, but no one is listening, however you eventually wake up and life
moves on and the tunnel length is as it should be and thd light is in sight and attainable again! 
So we reached the light and upon finding it and having Harry home we breath a sigh of relief! With being at home and reunited after 2 1/2 weeks of being apart, plus the 3 weeks prior to hospital being a chaotic nightmare, well we try and regain some normality to our lives. However, it is not easy for us all to just switch from the mentality of trying to support a poorly Harry at home and then in hospital to being back at home and well, being a family again. Harry has undivided attention from one of us in hospital and Callum has a lot of attention when home too, but is looked after by a handful of people including nursery staff as well. He just constantly asks where he is going and who is picking him up. So to be home as a family is fantastic, but we have to take a few days to adjust again! At first I was on a high that Harry was home, but after a few days I started to reflect on the enormity of the last few weeks and I have to come to terms in my head with the turn around in Harry. A few weeks ago we thought he was slipping through our fingers and this is not the first time we have thought that in the last year, but to go from dealing with the emotions that come with those thoughts to having gregarious, inquisitive Harry back, just takes us time to adjust to. I think it takes longer to recover from each knock you have and currently neither Paul or I feel that sociable. However, if we can keep Harry on an even keel for a bit, then we will be up for going out again and socialising, so folk out there don't take offence if we don't want to go out, we are just adjusting to being at home and enjoying being at home! We are enjoying the mundane activities such as bathing the boys together at bedtime, hearing either the fits of giggles that comes with splashing each other or the cries, because the water has gone in their eyes, but both sounds mean I have my boys under one roof and the boys are back in town! 
So Harry's first full day back at home was spent on a baking mission! Harry got lots of new cooking equipment from Janey, which he was keen to use, Callum was Harry's assistant! Then Monday we had a family day out. We had won a chair on eBay, which was to collect from Gateshead, so we went up there first, then to Saltburn, where we had a pub lunch and then went on the beach to get some fresh air. Running on the beach with my boys felt like landing on the moon! A far cry from the stuffy hospital room! We then went and met Jenny and Baby Torin aged 1 month, on the way home. So a funpacked, fun filled day, making the most of a day as a family, because we never know when hospital looms for Harry! 
The huge Milestone this week has been Harry starting school! Tuesday I wasn't sure whether to send him because he was still neutropenic, which means his immunity levels are low, but after a discussion with our McMillan nurse when Harry was in clinic, it seemed the best idea to grasp the moment whilst Harry is well and send him! So I spoke to school about sending Harry on the Wednesday and we agreed that I would go with him and he would just stay an hour. He loved it! On the Thursday he stayed 2.5 hours with me, though I spent muchof the time in discussion with Michelle from the homeschooling team and talking to the head. Harry didn't seem to mind that I wasn't really with him, so on Friday I left him for an hour on his own! Harry loves getting dressed in his uniform and Friday afternoon when at clinic at LGI Harry was keen to show everyone on ward 31 his uniform whilst awaiting his blood results. He raced downstairs as soon as he could and darted onto the ward saying 
'Ta Da', he was a different child to only 2 weeks earlier! Everyone was suitable impressed to see him! 
I never really appreciated the significance of Harry wearing a school uniform, but it has given Harry a new status. He's been yearning to start school since last September when some of his friends who are July/August babies started. Now he goes to school he feels he has the same grown up status! He is so proud! When it came to the weekend he was like, I get 2 days off from school! Hope the novelty lasts forever! He had a good weekend, though some of the side effects of his new drugs are starting to kick in, such as cramps in his legs when he's been sat a while and dry skin, which has occurred on his face. His Haemoglobin was borderline anaemic levels Friday and this was apparent at times, particularly as it seems to make Harry more restless on a night. However, he went to school Monday and I left him for 2 hours. When I went to collect him, the children were having playtime inside after lunch. I couldn't spot Harry at first, but when I did I wish I could bottle that moment, as it was lovely 
to see a happy , Harry playing with the other children, making a puzzle! Callum saw Harry's classroom too and Harry relished in showing his little brother around. Callum now wants to go to school too! 
Harry going to school does mean I have a whole new system to deal with though, trying to explain Harry's situation to new people and  getting them on board with Harry's treatment plan. The Mcmillan nurse has been fab in liaising with the school as has the home schooling team, though time will give the school confidence in managing Harry. I do feel like an administrator for Harry's services at present and spent a chunk of last week speaking to various services to get more support. This is great, but I'm not sure if the services are really what we want, but we have to try them first. So Harry is entitled to about 4 hours in put from a registered nurse each week, this is care in our home and someone I can actually leave Harry with, we are meeting a new volunteer next week from the sitting service, who can provide 3 hours a week in the home and again someone I can leave Harry with. We have also been linked to a CLIC Sargent volunteer who can play with Harry again at home, but I have to be there. These services may be useful, but most of all I want extra support to enable Harry to attend school for longer, not more services within our home whereby Harry spends so much time when poorly. However, if Harry is poorly, the nursing team will be appreciated. I also have to co ordinate with the home schooling team, so they can work with Harry when he is not well enough to attend school much. I am grateful after all these months to be getting some input, but at present, I just seem to be chief co ordinator. Once we have tried the services, only then can I assess their usefulness!
So having had a great room in the teenage ward last night, per Harry's operation, but rubbish Internet access, I didn't finish this blog, so can update you that Harry successfully had his port put back in today! We went up to theatre for about 9.50, but as some notes were missing, we waited there for 20 mins before they arrives. My inquisitive Harry though, took the opportunity to learn what all the machines and wires do, well why waste an opportunity! 
He was in theatre for 2 hours. He came round, sore and was puffy faced, how he looked after his operation in April! He soon recovered and was joking with mummy and daddy in his room, in fact he 
even had the energy to have a lesson with Michelle from the home schooling service! So topped up with platelets and red blood we got him home for 8pm! Go Harry! We all love you! 

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