Yesterday when I left for work I was pretty concerned about Jude. He had ran a fever through the antibiotic the night before and when Charlotte had arrived that morning he was retracing a lot. Charlotte really worked with him and hospice had shown up and they worked with him as well. They got him pretty comfortable but Charlotte said later that afternoon Jude started having difficulties maintaining his oxygen levels. In fact at one point while Jude was sleeping his oxygen went to 63 and Jude woke up panicked and crying.
When I walked through the door from work Jude's oxygen alarms were going off and kept going off. His levels would range anywhere from 84-92. I remembered that Melinda (hospice) told us that eventually we would probably see a decline that took Jude to a new normal range of the high 80's low 90's oxygen stats. It seems we have hit that decline. We would really work with him with manual CPT, re positioning, suction, breathing treatments, medication, and more to try to get his levels back up. Eventually I took a deep breath then reached over and turned off his monitors. When the night nurse got there I explained what was happening and why the monitors were off. I told her we have switched to spot checking the oxygen about every 20 minutes or if we see a significant change in color or awareness. Then I remembered those lingering words from the doctor "maybe someday you won't need the monitors anymore".
Jude would look at me last night and he was very calm with his medications. He even gave me a tiny smile under his mask but he is very sick. He is pale and doesn't have much physical strength but he is still a fighter. I told him I hated seeing him so sick and that if he was to tired mommy would find him someday. I tried to hold back the tears but they came anyway.
Hospice got there about 1:30am due to tie ups with other families that needed their help. I had slept for a bit but not long so I got up with her and greeted her when she got there. Then I went back to sleep. I was up and down all night and Jude was too. I am physically exhausted and it's truly taking a toll on me because I need some good sleep. I am at work and I hate to leave again but I may just have to. Emotionally I am okay........we go up and down but I really am. I understand I have been blessed with Jude longer than anyone thought I would be. Like I have said before he may be here days, weeks, or years but he is here now and that's what matters. So we take it an hour at a time.