I see a significant change in Jude since this last bout with pneumonia. So what I am trying to distinguish is if this is our new normal baseline or if Jude is deteriorating further. Our weekend nurse told me the other day that he was surprised at how Jude's appearance has changed with this illness. Last night Jude was having a terrible time coughing, keeping his oxygen up, erratic respiratory rates, and clearing congestion. We suctioned him on a consistent basis and we had to turn his O2 up to 8 liters. After a dose of Ativan Jude's respiratory finally calmed down. Jude's stats are still good as long as he has oxygen on. Without the oxygen they plummet. For the first time I stood over his bed and told Mike this is not how I wanted Jude to live. This isn't fair to him and I hate it for him. We do what it takes for our children to survive but living a life in pain, fear, and gasping for air at times isn't what any of us intend for our children.
Jude does have good hours where he smiles. He still seems so weak but he smiles and even tries to conversate with me. Jude slept fairly well on Friday and Saturday night. I would have to get up multiple times but not as much as normal. I also had a nurse and since it was the holiday I could sleep late and catch up on my rest. However, last night Jude was up until about 1:30am. He then had a few times he woke up coughing, crying, or needing to be turned. So we are sleepy at work again.
I talked to Hospice today and she agreed that it's just hard to know where Jude is at. If this is a new baseline and how he will be, if he is trying to get better, or if this is a sign he is not getting better. All we can do is watch him and evaluate each symptom then hope for the best.