It has been a week of worry because we got a call from the doctors to say that one of Angela’s liver tests was a bit high and needed to be retaken; Angela has also been struggling a little more with her eating and her speech. We went to the hospital yesterday to have a review by the MND nurse and the speech therapist; the nurse asked a lot of questions about how Angela gets around at home and had Angela had any weakness in her neck to which Angela said “No”.
At the end of the nurse’s questions she said that she was happy with the way we were managing with Angela’s condition at this time and they were happy with the range of motion that Angela has, the nurse did say that there was something that both Angela and I needed to think about for when the time comes and Angela is no longer with us, but it’s a little upsetting to think about that right now.
Then it was the turn of the speech therapist, she asked how Angela is managing to eat and we told her that Angela is struggling a bit more and relying more on the PEG, they concluded that her swallowing had gotten worse, but they were happy how we found a way to manage it by blending her food and only making meals that are soft.
At the end of the consultation the nurse said that they have a conference every year where they discuss ways to help MND sufferers better, she asked if they could follow Angela’s diagnosis and take photos of us for their conference to which we both said “Yes”.
That was yesterday, today we have been to the sleep centre, this is where they check the Carbon Dioxide levels in Angela’s body and monitor her breathing, the last time we went there, three months ago, her Carbon Dioxide levels were 5.1, and today they were 4.8. That is better than the last time she had the test performed.
The hospital are pleased with that, and she has now been discharged from the sleep centre. On Monday we are going to the hospital again, but we have requested this appointment, we are going for a fit to fly test to be performed on Angela to see if it is safe for her to fly…