Tuesday, 25 September 2012

Another day another temp

Back at hospital this morning and so very happy to be cuddling my little man again! It was the first thing he asked for when he saw me and I couldn't have picked him up quick enough. Scrumptious little man. He had a high temp again last night but not today. The doctors say that he has to have no temp for 24 hours before he can go home so praying for that! If we can have no temp tonight we might be home tomorrow.

He was so happy to see us all when we walked in and kids have been playing with him and having a good time. I'm so happy when we are all together! It's truly these moments that mean so much.

Jenny our neighbour came to visit later and jayden was over the moon. He loves her like a grandmother it's beautiful. We are so lucky to have her living next to us. When she left the kids went with her and danny and I remained.

This time round we have allowed visitors as it brightens his day when he's stuck in his room all the time. As long as everyone is aware not to come if they are unwell. So if they are well and they wash their hands before they come in then we don't mind. So he's had a few visitors in the last couple of days and it's been really nice for him and us.
His Nanna came to visit as well and he loved that! Danny and I had to go to an appointment and Nanna stayed till we got back a couple of hours later. Bless her, she is truly wonderful.

He is now asleep in the most uncomfortable position imaginable but snoring happily and looking very peaceful. He's still getting IV antibiotics and some sores have developed in his mouth. Hes still on a constant flow of fluids in his lines and feed through his ng tube. He still cramps over in pain when his bowels move and requires pain medication but through all this he's still managing To sit up, play and smile. Amazing.

He had to have his dressing changed today and he didn't like that. Has to be done every seven days and his little chest is getting so sensitive to it all that I think it gets sorer every time. He got through it though and the nurse who did it was super quick so the stress didn't last for long. I think maybe that and all the visitors has got him so buggared now and that he's asleep.

I just went down to the parent room to make a cuppa and on my way back i saw a beautiful little boy walking along with his mum and he was attached like them all, to a line attached to some form of fluid or antibiotic attached to a pole on wheels.(certain there is proper medical terms for all that) What I noticed was how upset he was about it all and his line in his arm. I knew instantly that this is new for him and my heart broke for him and his family. It took me back to when jayden had his first line. It's instant, the moment you are admitted they insert a line and his 'new' life begins. It's so very tough for them for one day they are happy playing with their brother and sister and their toys and the next they are stuck in a hospital with a needle inserted to create a line and attached to fluids that are hung on a pole on wheels. This boy was clearly stressed about the whole thing and who could blame him? He doesn't understand, he never did anything to deserve it, you can't explain it to him and this is now his life for a while. How long? Nobody knows for sure.

Jayden is now an old hand at it as this boy know doubt will be one day soon. Jayden still doesn't understand why and certainly did nothing to deserve this but he takes it in his stride anyway. When the nurses bring out the blood pressure cuff he lifts his leg. The thermometer, and he shows them his ear. For medicine in his line he holds it up. He just knows what's going to happen and what he should do. This is for the stuff that doesn't hurt of course. When they give him his injection that he has DAILY to bring his counts up, he's screaming before they even get to him- of course. But he will lay there without struggling when it's getting done.
He now pushes his own pole around when he's out of his room if you let him. But unfortunately because he has a temp he has to remain in this room. We can't take him out to the garden or anything. Does he complain? No, not anymore. It will truly never stop amazing me his strength and spirit, his will to live and keep going and just how damn brave he is.

I really hope with all my heart he doesn't spike a temp tonight as I so want to take him home. As much as he is brave and amazing he's still my precious little boy I want to keep him safe. I want to scoop him up and make everything better for him and Take away all the pain. How I wish for a magical wand or miracle. for now though I just wish for no temperature and for him to be home with his family, where he should be.

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1 comment:

  1. I so hope you got to go home and be together with your precious family. Reading how life is for Jayden and those who love him most, makes us all remember what is important in life. You make us hold each other tighter, be more patient and most importantly not take anything for granted. Love and postive thoughts sent to you always wonderful Mumma xx