Day 335

Well when I arrived this morning I found Ellie wasn’t her usual happy, smiling self. She looked exhausted. She had managed one half hour and one 15 min sleep but was working quite hard with her breathing and there were questions about whether or not she was coping with all the changes that were made last week. It was decided to leave everything and just see what happens as more changes could upset thing. By about 1130 we realised she was probably getting a cold.

She actually had a one hour sleep after that and looked a little better but more like she had a cold. Poor poppet, she work of breathing varies so her little body is getting a tiny break from working super hard constantly but it still isn’t as good as usual. It is probably equivalent to her breathing after she has been exercising – so imagine breathing as hard as you do after a jog or fast walk. She is still saturating well and everyone seems happy to just watch her very closely.

Feeding wise, we are still unsure as to why she was vomiting, the time the feed takes to go in was lengthened, also her feeding tube was readjusted, since the adjustment there have been no vomits – we are hoping this helps. The increase in her reflux medication appears to have made her more comfortable.

Otherwise it was just another poo filled day, I think 5 or 6 with 3 dirty outfits…. lucky I had help with the worst one. Only one 10min walk today due to Ellie’s work of breathing.

Will try to remember to take photos tomorrow.



3 thoughts on “Day 335

      • Actually wasn’t trying to be funny… How about: hope you’ve mastered the art of surviving on 3 hours of broken sleep total and that Ellie’s cold is just the common garden-variety snotty nose that goes away after a couple of days – more realistic wishes? As always, thinking of you x


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