Thursday, 17 January 2013

More Energy But More Pain :(

Since being very poorly last week I am doing much better. Nobody knows what was wrong other than I had infection somewhere and the infection is still un-identified. Beginning of this week I was started on antibiotics again because I was showing signs of infection, they are thinking and hoping that its my chest and nowhere else. We got a couple of results back from my bronchoscopy, one for a serious illness common in children like me who are vulnerable was negative (phew, relief), another was to see if I'm aspirating. I am, still! They result was very high acidity levels so discussions are being held to see if more testing needs to be done or if they go ahead and do an operation to help this problem. My Gastro consultant wants to get things in place to get me home. They can't protect me very well here from getting poorly, my immunity is still very low. They put aprons and gloves on when they come into my room but he said its not going to keep me safe. There's a lot that needs to be sorted before I can go home and a lot of equipment is needed but we are going to get it all in place ready for when the window of opportunity comes. My respiratory team came earlier, I've got to do an overnight saturation trace tonight to see if my oxygen levels drop in the night, they know some days are worse than others and if my belly is distended with air or fluid this makes my breathing difficult and my oxygen requirements go up on those occasions. They know when I'm on oxygen I'm well and cope ok so they said we may have it plumed in at home anyway for when these things happen. Everything is all coming together, it all just takes time as there's so much involved.
The new antibiotic I started on Tuesday isn't agreeing with me very well, since being on it it's made me nasty and naughty. Steroids had the same effect on me but it was far much worse than it is now. This medicine is only for 5 days so I have to see how I am once I'm off it. The pharmacist said that mummy has to let her know because if it is the drug then they need to forward information on. They haven't used this drug much so any side effects need to be noted. Past few days my pain has gone up, struggle to get comfortable at times and I've been grinding my teeth and getting very frustrated. Hopefully it'll settle down again soon. My consultant said that pain is one of the many things we have to deal with the best we can and that I have to have whatever pain relief I need to keep me comfortable.
Mummy's hoping that soon I'll be able to get out and about a bit once my immunity comes up some more, then I might get to see some of this snow that's meant to be coming!

Chillin' watching lazy town


  1. My darlin little boy. you are so brave and people are supporting you in this fight all the way. You and your mummy are going through so much, you have both been absolutely fantastic the way you have handled things life has cruelly thrown at you. Yes you are deffinately a very special little boy and maybe one of a kind but your mummy is very special too. She has devoted her life to you and is going to be fighting with you all the way.Nannie, Grandad, and Dee Dee are looking after your sisters to make sure your mummy can be with you 24/7 cos you need her and she needs to be with you. You are both going to come thtough this and people are going to learn alot from you. I can't tell you enough how proud we all are of you both and you are both loved so much.Nannie,Grandad and Vikki will do whatever we have to for you both. We are here for you. Loads of love, Nannie.x

    1. Snow is her in f vale and is very cold. Love to you and mummy x x