Our wonderful friend (and honorary family member) Leslie Mouncey is raising money for Heart and Stroke Foundation in honour of her Dad. They are looking for more 'riders' for their team and also gathering donations! Until this year I thought of Heart and Stroke for my Grandparents, it is also for our children! Braeden had heart surgery and suffered two strokes in his first two months of life, he is also the face of the Heart and Stroke foundation!
So our stay on Unit 2 was a short and sweet one this time around, only one night. Hardly seemed worth the 10 hours in Emerge the day before aside from our warm welcome from out Unit 2 'Family'. Mr.B had a good long sleep flat on his tummy in Emerge and through that managed to move some crud in his lungs around resulting in better air entry, the best he'd had for awhile! He had a good, well sat'd night on Unit 2 and there wasn't much reason to keep him much longer than that.
We did get some thing accomplished while in for this tune-up however. Dr.Brindle changed out Braeden's Mic Key (g-tube) for an Entristar which has a 'basket' in his tummy as opposed to a balloon from the last ones. It wasn't a particularly nice experience watching it put in as it was bigger than his existing hole but he persevered (not that he's ever given much choice the poor duck!). So far we've had a decent experience with it, it's not a user friendly as the g-tube or Mic Key but I am learning. We did however have a massive retching episode last night after his feed and through my lack of knowledge (and panic) we literally had feed spraying the walls (my nursing friends can laugh at that!).
Another thing we decided was to switch Mr.B's formula to Nutramigen AA (from A+) with the hopes of eliminating this damn diarrhea and slimy poops. The AA is a completely broken down formula so it is much easier on his tummy. Side effect so far? He's flippin constipated again, which is how we started this whole cycle! We are off to the Pediatrician this afternoon so I am hoping she'll shed some insight for us.
Mr.B however is his usual happy and full of light self. He's so very forgiving for all of the hell he is put through (like 5 pokes to get a line then to only lose it 5 mins later). I feel horribly guilty that I put him through that again in Emerge to only have him breathe better once upstairs. This child has also had enough xrays so that he'll almost glow in the dark. It make me concerned for the future with all the exposure he's had but what is the alternative?
I learnt the next day when he was on Unit 2 that he'd been screened for Cystic Fibrosis when he was a new born through genetics and it was negative. I was more than a little annoyed that the Dr the night before had gotten me so wound up about it that I didn't sleep! As it turns out (yes he could have it, no he couldn't, yes he could) that the genetics screen isn't a complete diagnosis and that kids that come back with a negative genetic screen could still have CF. I'm not nearly as freaked out about it anymore, I spent the morning this week in the Respiratory Clinic with B and as I was waiting I was reading the walls for the CF Clinic of all the kids achievements and their stories. Very touching and inspiring. As it is the Respirologist that saw us this time doesn't see any major need for concern with CF (and she would know I would think) but they are still considering testing him (sweat patch test for secreting Sodium Chloride) next month when we have our next visit.
There are days when I dream for a diagnosis so we can have some sort of idea of what the future could hold but on the other hand I also realize it is a bit of a blessing some days not knowing. Braeden is so full of life and love that he touches anyone that comes into his life, how can that not just be enough for now? Ironic as I am feeling so run down these days and that my spirit isn't full. I'm tired and just plain worn out! I need to refresh my own spirit and I'm not sure how to go about doing that. I am SO very blessed with our boys, they are my life and love and each time I kiss Braeden I am aware of how fortunate I am. So what is it? Not too sure at this point but I'll keep looking and plugging forward. I have three amazing little creatures to love and a husband that works his heiny off so that I can be with said boys, life is good. We are built to be survivors after all!