Monday, December 28, 2015
A run down on Christmas and today's cluster
I worked on Christmas Eve until about 12:30 and then I went home and made a classic turkey dinner for my friends and family. My friend Gina came over with her children and we all played card games and waited on Santa to arrive. Mike's mom also made the trek to our house to spend some time with Jude. She is such a kind lady and really goes out of her way to see Jude on a regular basis. While we were playing cards Jude kept experiencing drops in his heart rate on a pretty consistent basis. He was sleeping so I tried re-positioning him and it did help some. Jude has done this a few times before but never multiple times in a row. In addition it would drop to the 40's and just hover there for a bit before it finally went back to normal. The hovering part was also new and rather concerning. I decided to call hospice to see what they said about the situation. They said it could be either his sleep apnea causing a build up of carbon dioxide, an infection somewhere in his body, or a deterioration of his condition. Luckily this issued slowed throughout the night. I do believe it was his apnea but I believe it's being brought on by a possible lung infection again.
Christmas started off WONDERFUL. We got up, shared our gifts, and went to an early show of Star Wars. However when we returned all hell broke loose with Jude. Jude had a horrible Christmas. That sounds harsh but it's true. He was tight, rigid, screaming in pain, crying, and just overall miserable. Nurse Allan was with him and Allan rarely gives Jude PRN medications. That day he had to give 28 rounds of medication and nothing worked. Jude would fall asleep for thirty minutes and wake back up screaming. Finally after everything failed we call hospice who really couldn't do much either. I had already asked for blood work and they said that was the right course of action. Unfortunately, there wasn't much more they could do for him that we were not doing. No one could get blood work until today and he was maxed out on medications. They plan on checking the blood to see if there is an infection.
Saturday Jude started running a fever but he was so happy. Poor little boy had bright red cheeks and a fever of 100.8 yet he found a way to smile through it all. It was a complete 180 from Christmas but still a pretty good indication that something is going on.
Saturday night we sat glued to our Tv's as we watched our neighbors to the East of us deal with horrific events. I have mentioned before that I have been in multiple tornado's. Once you have been in one or see the aftermath of one you never joke about them again. You never think you are being dramatic and you never fail to respect mother nature. I sat in tears as I watched this flash on my TV screen.
Then today........sigh. Jude woke up with a barky seal cough and yellow secretions. In addition his feeding tube failed yet again and nurse Allan is not feeling well. The only day the doctor can replace Jude's tube is today. So I am trying to coordinate setting up transportation for Jude to get to the hospital. I considered going home and riding with Jude to the hospital but Allan says he will be fine. I then have to meet Emily to get her a key. It's just a cluster this morning. In addition we have some nights this week we need the agency to cover for Jude's nursing. I am hoping that goes through smoothly. I think the single hardest part of all of this has been working full time and not being able to be home to handle situations like this.