When I got home from work Jude was becoming toned out so I gave him his scheduled Valium and Baclofen and put him in his wheelchair. This controlled his pain and tone for awhile but then all hell broke loose.
Emily and her boyfriend where in the living room watching a show with me and Jude just started wailing. It took hours to get him under control. Emily even said, "this is the worst I have seen him". I held him every way I could, gave him his new muscle relaxer, and more. I took him into his bed and set his nightly feed and medications up. I set him up around his boppy to try to break the tone. Soon he became quiet but I noticed he became pretty pale. So I hooked up his monitor and his o2 was at 81. He didn't have a lot of congestion in his throat so I hooked him up to his oxygen and got his level up to 87. Still not fantastic but it was enough to let him drift off to sleep. Jude woke up several times throughout the night and two of those times he was screaming in pain. He then woke up at 5am and just stayed awake. When I went to check on him I noticed he felt very warm so I took his temp and it was 99.8 axillary. So I have him some Motrin and waited to see if it would work. Soon he began to feel cooler. Mike is injured so he is unable to help with Jude and by work time I was beat! So I texted my work and told them I would be a bit late so I could lay down for a little bit. Luckily I have that ability.
Once Charlotte got to the house I turned the baby monitor off and climbed into bed for a bit. The extra hour was really needed. When I was leaving for work Charlotte explained that she had suctioned a lot of mechanical congestion from Jude's throat and that his oxygen level was back at 97. She did say he had a rough hour when she first started attending to him. So far this afternoon Charlotte said he is doing well. Hopefully he will stay that way and the fever was a fluke.
Charlotte is off tomorrow so we had to find a fill in for tomorrow. We yet again had another nurse debacle! The LVN came this morning to orient with Charlotte then when she left she called the agency and said she wouldn't be there tomorrow. This was a reminder of the prior nurse situation a few weeks ago. I am not sure if they truly have situations that come up outside of work or if they are just worried about caring for Jude in his condition. Anyway, the agency found an RN to fill in and she is training with Charlotte from 2-4. This all makes me appreciate our nurses so much more and we are truly thankful for them. Jude's nurses are on time, caring, and organized. I was very stressed thinking I would be missing work again. As much as I would love to just stay home and hold Jude it would mean another day off.
Emily has to be at a football game tonight but I literally just want to lay on my couch. I feel like I am caught in a thunderstorm lately without an umbrella, but Jude's smiles give me rays of sunshine and a break in the clouds at times.