just wanted to say how wonderful a gift that was belfie - and Glenny_c i hope your little man continues to get stronger each and every day. You have given me some great advice on BB and i was so sorry to hear about CHarlie's struggles so far.
Bad day today. Charlie went a little downhill and has had to be put back on full breathing support. He was on bipap which meant he controlled his breathing but the mask gave qxygen support, He has a breathing tube again now which controls everything. He's also been put back on full sedation to give his body a rest as his heart rate was going through the roof. So far hes a lot calmer and his numbers look good, Next challenge is to see if he can come off the breathing tube again in a couple of days.
When I get frustrated and are tired doing 2am feeds etc.. I just think of you guys and little Charlie and what a brave family you are. That snaps me out of my woe is me phase.
Always in everyones thoughts glenny xx
today is a new day :-)
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