MORE IMMUNOS- MORE POO!!

A crazy week for us of ups and downs. Firstly, Harry... Harry had a specialist appointment on Tuesday in Dunedin and we have made the decision to put him on immuno suppressants also. We have come to the point in this journey where we feel like we are no longer coping as a family. Actually we have felt like this for some time but we wanted so much to get Harry through this without drugs but I just can't watch Harry in pain any longer. He screams every day at us saying "Take my skin off" and "My skin hurts". I feel like we are torturing him! Enough is enough. We have hung on for eight long months and we have seen healing, very slow healing but not enough to continue this way.
Last weekend I turned our bedroom upside down trying to find steroid cream in desperation to ease Harry's pain.  I did find some and used it. I honestly thought I would never touch topical steriods ever again. I guess this proves how desperate we are! Unbelievably Harry slept all night, the first time in eight months...actually the first time ever! To me this proves how addicted his wee body is to topical steroids. He had the fix his wee body was craving. He is on antibiotics now before going on the immnos in a couple of weeks. After a day of being on them we have seen a huge improvement -  Harry is a changed wee boy..momentarily at least. He's sleeping, playing, laughing, he didn't wear socks the other day all afternoon and tonight he didn't have his sleeves on for a little while and there was no scratching! He has had a couple of itch sessions throughout the day that are short lived. Harry pulled up his sleeve tonight and said "My arms white". He's also said "I feel good now".
I do feel defeated and have moments of doubt in what we are doing, swapping one drug for another but I need to think of all of us in this decision. Ultimately I want my baby to be comfortable and happy again.

Oscar had his last lot of antibiotics last Sunday and on Wednesday he woke up with diarrhoea and vomiting again.  Thursday was much the same. The doctors are running more blood tests and stool samples. Far out, the amount of poo we have been dealing with the last few weeks! There's a couple of things the doctor and paediatrician from Dunedin are looking into so hopefully we will know more next week. Oscar is happy enough at this stage thankfully and his bowel motions seemed fine today but he has a sore stomach again tonight.  It will be interesting to see how he feels over the next couple of days. Fingers crossed his body is just trying to get back to normal after being on antibiotics.
A tiring week emotionally but thankfully with Harry sleeping better this week I feel like I have been able to cope with it all without feeling too frazzled!

Clear skin after a day of antibiotics 

A HUNGRY BOY

We are home again and Oscar's appetite has well and truly returned! It is so lovely to see him eating again, smiling and playing.
The doctor's seem to think Oscar had a bug of some kind attached to the lining of his bowel and as he's on the immune suppressants his wee body struggled to fight it. He's on anti biotics for 10 days and off the immunos for two weeks so hopefully this should do the trick. We came home to lots of beautiful cards from Oscar's class mates wishing him well. He was so chuffed reading them. Tonight Oscar said his tummy rumbled and told him he's not going to be sick tonight so the towels and sick bowls have now been put away finally.
Unbelievably Oscar's Skin looks amazing! He's barely eaten for the last couple of weeks so I'm presuming that's why.
Considering how sick he's been, Oscar looks remarkably healthy! Fingers crossed this continues.

Harry has a cold at the moment and looks terrible. His face is all red and splotchy and the rest of  his skin is a bit worse for wear. He's quite miserable so hopefully he be feeling much better in a couple of days. Oscar and Harry's health never seems to quite line up being healthy at the same time... surely one day they will.

A big thank you to our family and friends for their care and support this week. Thank you also to Oscar's classmates for their beautiful cards.  They put a big smile on his face.
Here's to a better week to come!

HOSPITAL!

I'm happy to report Oscar's Skin looks amazing!... For the fact he's barely eating. Today is day 15 of him not being well. Intermittent vomiting and diarrhea every second day. Food poisoning has been ruled out and we are waiting on the giardia test still and bloods were done today. Poor wee Oscar, gosh he puts up with a lot! He hasn't been back at school this term and I can't see him going back this week. I'm going to have a very big job on my hands trying to settle him back in to class. At one stage I had thought perhaps he's making himself sick so he doesn't have to go to school! I'm pretty sure that's not the case though. We just want to see him well again. The sooner he is off the immuno suppressants the better.

 Harry's got a slight cold at the moment and his skin has flared up.  He managed to scratch his arms to bits within seconds while in the bath yesterday and last week got to his legs while he was supposed to be snoozing! I walked into a terrible sight of blood all over the carpet, he managed to take all of his clothes and scratch sleeves off and his legs were raw and bleeding. I wanted to scream at him! He needed to have a bath so that I could wash the blood off and the poor wee man was in so much discomfort. Possibly one of the quickest baths he's had. Harry's still playing and is generally happy so at this stage I'm feeling ok with where we are at in terms of healing. Obviously I would like to be closer to the end of this journey than we are but I know how far Harry's come. It's just so frustrating seeing him damage his skin as it puts him a step back in healing. Taking the good with the bad..that sums up life really!

Update: The above was to be my next  post and I was going to add photos today but we are in hospital with Oscar in isolation as he's still sick. They are not sure what's wrong at this stage. Some of his blood test results were out of range so he's being monitored. Nine thirty in the evening we are waiting for stomach x-rays and we're cuddled up watching Grease on TV.  I feel relieved to be here as he's been sick for far too long! Will update when we know more.