Swings and Roundabouts?

Swings and Roundabouts?

Since my last post we've had a few developments to let you know about :)

Sam has remained at 4+ on his dipsticks up until Wednesday and has still been having bouts of terrible pain in his tummy! These moments are really hard to watch...knowing that you can't do anything for him at all! Holding his tummy seems to help a little...but I suspect only mentally for him.
On reporting all this to the hospital, we were advised to increase Sam's ciclosporin dose back up to our good level of 0.45ml twice daily.
This does mean that a biopsy will be required....but this, at the moment, can wait until Sam is comfortable and back in remission.

On Thursday, we had a small breakthrough...at last! Day 7 of the steroid treatment and we are certain that the dipstick reading was a clear 3+. Unfortunately, Sam didn't seem to be feeling any better at this stage, but we hoped that this would be the start of things improving. We visited the hospital in the afternoon...just so that things could be checked before the long weekend.
Again, although he was still retaining lots of fluid (now weighing in at 20kg!) and feeling very uncomfortable, there were no signs of anything more worrying.
The tummy pain could only be explained as pressure from the fluid and anytime any food was added, this caused extra pressure and the pain. Hence, Sam had not really eaten much at all, all week. Each meal was slow going with Sam eating a couple of bites at a time, before having to stop with pain for longer periods!

Saturday morning now....and what seemed a major breakthrough!
Sam woke up and seemed much happier in himself. Very lively compared to any other day for the last 2 or 3 weeks! His eyes were bright and he was up and playing with his toys and joining in with the family more. This was such a relief and so lovely to see at last!
His reading was showing 2+ today. This was a major improvement and proved to me that we weren't imagining the reduction of earlier in the week!
We had a slow start to the day, but Sam seemed so much improved that we decided to venture out (to our local Jubilee Celebrations) for the afternoon.
We had such a good time....enhanced by the fact that Sam was with us and not couped up at home still! This was his first time out and about in the last 8 days!

During the afternoon Sam ate the equivalent of 2 meals! Another major breakthrough! I was shocked and thrilled!! Not only did he manage more than 2 mouthfuls...there was absolutely no pain!
He lasted 2 good hours out enjoying himself...then had to rest. We brought him back home (with Gra) and returned to the celebrations.
A few hours later Sam rejoined us...but clearly had overdone it all as he instantly had no energy to do anything out there. He lasted another hour outside...but spent most of that time in my arms!  

The evening saw Sam eating another full meal with no pain. Again...such good news!

Then, a set back!

Sam awoke at around 2am in extreme pain! He was very disturbed and crying out and nothing we did seemed to help him!
The worst part was him shouting out that he needed to go to hospital!
This was so heartbreaking. After having such a fantastic day...this really was not the ending I'd imagined!
We sat up for a good 3 hours with him writhing and crying out in pain, before he finally relaxed into sleep again!

So, today...I'm good for absolutely nothing!! Exhausted!!

And Sam......

Is bouncing around like a little sprite again! (humph!....but still fab to see!)

His dipstick read trace/1+ this morning......probably trace...but we err on the side of caution for the moment.
He seems completely fine again.
Eating quite well....and we've had 2 wees from him this morning! (we've been averaging 2 wees all day for the last 2 weeks!!)

So, we're really hoping that last night was just a blip...and that now that the dipsticks are reading low levels of protein lost, that the drain out of fluid is beginning and remission is just around the corner!

Keep your fingers crossed for him :)

Sonja xx