Saturday, 13 April 2013

More problems ...

Made it safely home with Jake & Jessica. Now got to decide when to fly back out again — probably be when I have just started getting over the jet-lag!

For a few days there's been a noticeable 'stutter' in Adam's breathing. When he exhales it's not a continuous motion, but rather he stops part way through and then resumes. I'd asked him about it a day or so ago and he said he was fine, as he does. When I continued to ask him questions such as 'Does your chest feel tight at all when you breath in and out?' he became rather exasperated, as he does, and told me 'NO. I ALREADY TOLD YOU IT'S FINE. NOW STOP ASKING ME QUESTIONS!"

On Thursday night, after I'd left, he developed a cough, and Alison noticed his breathing was not quite normal. Of course I hadn't discussed anything with her (sorry Al) so she asked Adam all the same questions that I did, and got the same responses.

In clinic on Thursday morning Adam's O2 saturation was 94%, which isn't terrible but it is a little on the low side; this can be caused by the finger sensor not being left on long enough, or needing some slight readjustment. Oftentimes simply putting the sensor on a different digit is sufficient to elicit a higher reading. On Friday morning it was 94% again. When Dr Sholler listened to Adam's chest she could hear he was a little constricted, and so ordered a chest x-ray which took place shortly afterwards.

It turns out Adam has some fluid on both lungs. The cause is thought to be one of the medications he's on (dasatanib) as it's a known side-effect. Fluid retention probably also goes some way to explaining the weight gain that Adam's experienced (although I'm sure some of that is also real as he has been eating a little better since we've been stateside).

Of course it's not terrific news, but at the same time it's good that the x-ray showed up the problem, and that there's a likely cause. We've stopped dasatanib (and thalidomide — a different story, read on for that one) for the weekend, and Adam's had a diuretic to flush out excess fluid. Thalidomide we stopped because Adam developed hives on Thursday night after taking it. We've increased the gabapentin, and the immediate plan/hope is to restart everything early next week. Of course we don't know at this stage that the problem with Adam's lungs is definitely dasatanib — we will only be able to surmise that if it resolves now we've held it.

Going forward the plan/hope is that this new therapy combination will be having some positive impact on Adam's disease, and he can continue on it by managing the adverse side-effects as they arise and giving him breaks off-therapy when necessary. On Monday or Tuesday of next week we'll have some indication of whether or not Adam will be able to return home for a few weeks to continue therapy. Clearly a lot is going on right now, and the situation is always going to be somewhat fluid. But we're keeping our fingers crossed that he'll be able to come back to the UK for two or three weeks before flying out again for scans ...

1 comment:

  1. I've just spent the last 30 minutes reading your blog and crying my eyes out. What an incredibly beautiful boy you have! My heart goes out to you, Adam, and your entire family. I am struggling to find the right words to convey just how deeply Adam's story has touched me, and I'm coming up short. I don't know where you find the strength to continue fighting this battle, but you have my utmost admiration, as I am quite frankly in awe of all that you have endured.

    I myself have three children, Tom is 8 and has Asperger's Syndrome, (though he does not know this yet), Henry is 4, and Fiona is 2. I found out about Adam through a website called Post Pals because I have been looking for resources and opportunities to teach Tom how to be more empathetic and grateful for all that he has. It is quite common for individuals with Asperger's to struggle with feeling and expressing things like empathy and gratitude and Tom is no exception. I was hoping Adam will be interested in having a pen pal in Tom (and Henry, who can never be left out of anything and is the real leader of the bunch). It would help Tom immensely to learn about Adam and he and Henry are a rather entertaining pair, so Adam might find them fun. They would particularly enjoy making a video letter to send Adam. Also, we live just outside Cleveland, Ohio, so it might be nice for Adam to have some friends who don't seem so far off.

    I will be talking to my husband this evening about making a donation to assist you with Adam's medical expenses. I am afraid we cannot afford very much at this time, but I will be posting a link to Adam's story on my Facebook page and will begin to spread the word as much as I can. I desperately wish I could do more. May you be filled with strength, courage, and the knowledge that you are not alone.