Rhys is now 4 we have spent the last year and a half doing the same appointment dance we have been doing a while, His fatigue is at an all time high and we just can't seem to get on top of it, it became this horrible loop... he would go from play to fatigued, to refusing to eat/choking, then that would lead to dehydration and vomiting, he would then have issues staying awake, resulting in hospital admissions or Drs visits, and then finally he would start coming right but that was such a slow process that the fatigue would hit again before he was all better and it would start again, we just couldn't break the loop.
It was like living in a constant state of worry and anticipation because you know it's coming you just don't know when. After months of fighting he was admitted due to dehydration again, but this stay was different. Our pediatrician was the ward Dr that weekend and she orders blood sugar levels and a ketone test to be done and BAM! The loop is broken! Turns out every time he would get fatigued he would stop eating and his sugars would drop and his ketones would sky rocket causing vomiting and dehydration which would make him sleepy and he would have a very slow recovery because his body was trying to correct the levels itself. The decision was then made that a permanent NG tube was the answer.
I can't describe in words how emotionally exhausting this time was but we were finally in a good place again. Rhys was finally able to fight off some viral bugs without ending up in hospital, he was using a walking frame and things to get around safely and we had his NG tube (aka 'Tubie') in... we were able to breathe a sigh of relief. Then after months and months of waiting I got a phone call, it was his Ped asking for us to come in for a chat. I don't know if you know much about the NZ health care system but it's not often the Peds ring parents to book an appointment haha, the nurses or booking clerks yes but not the Peds. Instantly I was excited and worried all in one, this could only mean one thing! That something had come back positive!!
I remember ringing Mark, my mum and one of my best friends Emma straight away just trying to process the phone call and my emotions because not actually having any information my mind was running wild. I had agreed previously for Rhys to be a study for the training Drs final exams so when we walked into the waiting area to see if we would be called on (it's kind of like jury duty) I saw our Ped. There she was... It would be so easy to walk up and ask her what she knew, what the results were but I wasn't aloud because she was busy. We sat there for 2 hours waiting, Rhys was having a blast playing with the toys. Parents were chatting and their kids playing. Meanwhile I'm sitting there like some creep watching our Ped like a stalker hahaha. I'm dead serious, it's embarrassing to look back on lol, literally every time she entered the room until she left again my eyes would be glued to her! but of course I didn't want to make it 'obvious' so I was doing this weird head tilt side eye thing, looking like a complete idiot because subtlety is not my forte hahahaha. Anyway we are told we can leave and I beeline to her! and go 'Soooooooooo you know something I don't know', she looks me dead in the eye and goes 'We will discuss that tomorrow, see you at 10'. The audacity!!! hahaha granted it was less than 24 hours away and you would get in huge amounts of trouble telling me out of consult but come on lol.
