Sorry if you felt ripped off by last nights blog, it felt very long to me typing one handed on my phone while holding Ellie. I didn’t realise how short it was til I saw it on a computer, oops.
Anyway this is the Ellie story (my version and ideas anyway). 16 days ago Ellie had just gone from CPAP to high flow and enjoyed her first bottle. 9 days later she was on low flow, minimal oxygen and no pressure, she was also drinking 4-5 out of 8 bottles a day. Then two days after going on to high flow she had her immunisations and the next day an hour long scan, then another quicker one in the afternoon. Needless to say as the week went on Ellie was working harder at her breathing and not drinking as many bottles, this was put down to her immunisations. My theory now is that she is flat out exhausted. It was only on the 11th June that we were called in because she was so sick. She has shown us what she is capable of, but needs to doing it all a little slower.
Ellie has severe chronic lung, it is going to take 2-5 years for lungs to become larger and stronger. All her tests are clear for infections and viruses. She is purely exhausted. Even though Hannah looks well she also has chronic lung. There are times at home when she has to work at her breathing simply because something has made her tired. I am going to use this as a reminder that my beautiful daughters can get very sick very quickly and easily. A mild virus to one baby will almost guarantee Hannah will be back in hospital and could put Ellie on a ventilator. Please don’t touch the girls hands or faces or any part of them. I’m finding it very hard because it feels mean to tell people to back off. But I have seen my girls so very sick, so if I seem rude I apologise, but please don’t touch my babies.
They tried Ellie on high flow for about 5 hours early this morning but her effort with her breathing increased again and she is once again on CPAP and looking comfortable. We will confirm with the consultant tomorrow that her hernia surgery will be postponed. She needs this week to rest and recover.
One thing I forgot to mention yesterday is the spot in level 3 that she has moved too. The only bed available was the bed in the isolation room, which means Ellie is getting one on one care (because of her positioning and the other baby near her), she has a heap of space around her bed and it is nice and calm and quite (very different to level 2). She can also listen to her music without annoying anyone. She has been getting a lot of visits from her nurse and doctor friends (she is now just metres from the doctors desk). So although she has had a setback, it is nice to see her looking well (normally a setback means she looks terrible because she is so sick) and she is enjoying the luxury of her private ‘suite’.
PS so far she has gone through 3 feeding tubes and two cannulas in 36 hours, thankfully they have given up on cannulas now.