Wednesday, 17 February 2010

bad news for Joe

I'm writing this on my Blackberry so hope it works.

The drs do their rounds every morning and evening starting at around 9am and 9pm and I always try and be present for them. I occassionally miss one due to them being very late or me having to express milk etc but on the whole I am in a good routine being there. Today's chat with the dr about joe didn't go so well. He has been taken off the steroids that were helping his lungs as he was suffering too many side effects, ie high blood sugars, high blood pressure (it was higher than mine at one point) and 'steroid rage' which is where the steroids make baby extremely irritable and they thrash around and become very unsettled. I think I mentioned yesterday how upset he seemed to me. The other news is that his lungs are very poor indeed and very, very damaged. I didn't ask too many questions as I'm not sure I am ready to hear the answers yet but we are facing a long road weaning him off the ventilator and as his lungs are so under developed it won't be any time soon.

I left the hospital at lunch time today as David and I had a meeting. I'll be leaving bright and early in the morning to get there for the drs round. As ever it has been lovely to see my family. Millie and I even managed tea and cake in the cafe at Tesco while David sorted out the shopping. The children seem to be coping ok with everything but it's still difficult not to feel guilty, especially this week while they are off school.

..Posting this now in case it doesn't work and I have wasted the last 20 minutes of my life typing it


  1. I'm sorry to hear this news about Joe, Sarah. Keeping both boys in my thoughts every day. I check your blog so often it's become an obsession. We're all routing for the boys and have high hopes! Stay strong, Sarah!

  2. Sorry to hear about Joe :( I also check your blog constantly, I always need to check in and see how the boys are doing...I can't imagine being in your place, but you are doing an awesome job being their mom.