Well I can't really get across how the last week has been. To hell and back probably best describes it! Emotions running at an all time high! To be told that all this medical intervention will make harry poorly is one thing, but to be witnessing it is another. It makes your heart ache beyond belief to see Harry become this lifeless little boy. Partly because you know how dangerous and precarious this process is. Like having an operation there are always risks, however with this 'operation' the timescales are far less defined and really 'how long is a piece of string'. So to have Harry lifeless from Monday till Friday has been the longest 5 days imaginable. It has felt like a 5 day operation. Harry's neutrophils went to zero mid week as expected. Literally rock bottom for Harry's little body! Around the middle of the week I was told Harry may have c - diff a short name for a very nasty diarrhoea infection, which is so hard to get rid of, particularly as his immunity was zero. I had thought of chest infections, pneumonia, but not this. I have seen too many people in my line of work get this and it is very debilitating, particularly when the body is so weak and unable to fight infection. The good news after Harry's stool sample went through further testing was he did not have this. However, for a short while the thought of it devastated me. The implications would have been no visitors except me and Paul because if it being so contagious to others. The thought of it just being me and Paul just made me tearful each time I thought about it! With Harry lifeless and the interruptions from nurses and doctors frequent, as are the beeps from the machines Harry is attached to, makes it hard to concentrate on anything for long. The mind therefore works on overtime at times! It goes to the darkest places unfortunately. Part of me thought Harry was well enough to have quality of life before this latest treatment (although i know without it his life would almost defiantely be shortened), if he died then I'd regret he never went on that aeroplane,or helicopter or ferry etc. I kept thinking even if Harry dies from all this in the end we have not had enough special moments! We have been talking about making some of Harry's dreams come true, it keeps us going! To try and plan ahead and think the future is bright and for grabbing as many opportunities to have fun as possible! Before Harry had to endure so much treatment, i had heard of charities that make dreams come true for sick children, but not given them much thought. However, i realise how important they are, as your child needs carrots to keep them going. They miss out on so much of normal daily life, the trips to the park, the recent sunshine, that to arrange treats and special days out becomes important and a focul point to aim for. So the local charity Make a Dream, that arranges less expensive, but equally exciting day trips may be tapped into by us if possible in the forthcoming months.
So it was our 9 th wedding anniversary on Wednesday. I had a meeting with Paul at home with the children's centre to discuss services on offer for Callum. Following the meeting I felt so emotionally exhausted that I bawled my eyes out. Explaining everything again to a new service and discussing how I do feel let down by the other community services as promised support has not come. Partly due to workers leaving and no continuity being provided.
So the meal out we had planned whilst mum and dad were with Harry, got exchanged for fish and chips at home. It was a very somber anniversary. You anticipate parking the thoughts of Harry and having some romance, but that day I could not park the thoughts of Harry! Seeing your son vomit frequently and have diarrhoea, then have mucusitus, which causes a sore thorax and gut is so hard!
The week progressed and Harry's temperature was still spiking, so his antibiotics were exchanged for stronger ones. He also had a chest x ray to ensure infection had not spread there. On Friday harry could hardly express his pain. However, we knew he was in a lot as he was complaining of pain and he seems to be such a stoical little fella! I visited LGI on Friday and as I left the nurse said to me that she thought Harry was heading in the direction of morphine to control his pain. As I left Friday I was not sure how long this rock bottom period would go on for.
I picked Callum up from nursery on Friday and he was as happy asLlarry, but after a sleep in the car and home again he was truly devastated that daddy and harry were at the hospital. He was sobbing his little heart out. Due to harry's lack of immunity, Callum cannot see him, for fear he will pass bugs from nursery on, so this does not
help. However, daddy rang to see where I'd put something and Callum spoke to him, I could hear harry talking in the background, which was amazing, As he was zonked a couple of hours earlier. The new antibiotics had kicked in and so briefly we were able to skype Daddy and Harry and this brought a smile to Callum's face and dried up his tears. It is so heartwarming to hear the boys tell each other that they love each other!
So Harry has begun to pick up over the weekend and instead of being that zonked out chap, he has had short bursts of energy and interest in the TV. This has been fantastic to see. We were not sure how long he would stay at the zombie stage and nor did the medics, but hopefully that phase has passed. Although we are far from out of the woods. Harry's neutrophils have come up to 0.18 today. He is still neutropenic, which means he has no immunity to fight infection and so isolation continues. He remains at high risk of getting an infection and could dip again, but hopefully not right down to the levels of last week. He has already had 2 transfusions of platelets and 1 of Haemaglobin - red blood cells. He will need lots more transfusions in the cominng weeks, as his bone marrow regrows and learns to support itself at accceptable counts of platelets, white blood cells, neutrophils and haemaglobin! He remains on his intravenous feed and I guess when his dietican comes back after the bank holiday then she will probably restart him very slowly tolerating food down his NG again. That's another area that Harry will need focusing on is his nutrition, as he needs to be built up again and able to tolerate food in his gut. He remains on many medicines and will be costing the NHS a fortune! However, they recuperate some costs through the extortionate parking costs. As mum and dad we have a parking permit, but any visitors, which of cause is all part of any rehabillitation, costs a lot of money. If a patient had no visitors, then they would be more likely to get depression, more institutionalised and cut off from the outside world and probably end up with a longer stay as they would take longer to be fit for discharge. This is definately a topic for Jeremy Vine! Although some months ago I heard on Jeremy Vine some oddball suggesting that patients pay for food in hospital, the big issue with that suggestion is we would be customers and then want a better menu etc etc!
So The Jubilee weekend. I was trying to explain to Harry yesterday who the Queen was. He struggled to get it, so I said you know Ben and Holly's little Kingdom, well there is King and Queen Thistle and they are very important and wear a crown and make rules that the little kingdom have to do. 'oh' Harry says and continues to play. Later, I say lets turn Cbeebies over (God Forbid!) and see the Queen. We watch the flotilla for 15 mins, Harry can't tolerate it any more so we transfer back to Cbeebies and Harry is distraught that the previous program before the Queen has ended!
Paul and I did manage to meet up Saturday afternoon whilst mum and dad sat with Harry and took Callum to a Jubille fete in Menston. Callum was made up to have mummy and daddy together. He was soooo happy. He enjoyed the punch and judy show and was shouting at the characters! However, to tell you the truth I will beglad when this weekend is over as again it is a stark reminder that Harry is in hospital and our family is split up and so we cannot unite, apart from briefly to join in celebrations. All you see is families having fun together and hearing about people going out as a family, or so it seems. It is probably amplified really as Harry can't join in.
Although it is nice being at home with Callum, it also feels wrong and that a apart of our family is missing, which is as it is. Seeing Harry's bedroom empty is wrong too. Being a part of the Facebook Community has its drawbacks too, as you see all these happy smiley pictures of people. I would never not want people to enjoy themselves, that is not my point. However, being in hospital with Harry, just limits the opportunities for fun. I also know that the pictures and commments people put on Facebook create an image at times and you display to the Facebook community how you want to be percieved. Sometimes you put a bit about the crap that goes on. In my case a bit more than most. Mostly though you want to give off this fun image. Therefore, what I am trying to say is behind some of those pictures is another story, the real one. The argument after the picture was taken, that isn't put on FaceBook! I do know for a fact that pictures tell the happy smiley story that you want the world to know, but underneath that story can be an undercurrent of unhappiness for many reasons. Some pictures of course do just show pure happiness, such as those of Paul and I on our wedding day. This was 30th May 2003 and it was just like one of the recent scorching days that we have had. It was such fun. Well the event of the year is nearly upon us, The Ball! There will hopefully be lots of happy smiley photos to show from that. I really will have to learn how to upload photos onto this blog!
One date to put in your diaries for June though is the 25th. Why you may ask, well a while ago Harry was filmed opening a present on the ward for this documentary. As said before, Harrry has kept asking when he'll be on TV and I said you may not be as hours get filmed for short program so you may be edited out! However, we have had to sign consent forms as has my parents who were with Harry that day and I can reveal that the documentary is called 'The Secret Millionaire'. Apparently it's about the Millionaire helping children's charities and apart of this was giving toys to kids, of which Harry was one child who was the recipient. I am sure it'll be a blink and you'll miss it moment, but none the less worth watching!
So we hope Harry continues to improve over the next week. One area we need to focus on when he is discharged is building his stamina up again. School looms on the horizon, which Harry is so excited about attending. However, he needs the stamina when well and not in hospital to be able to be there as much as possible. To make friends and feel apart of the social community is to me the most important factor initially. The work we can build on at home later.