I unhooked Jude from all his equipment last night and held him for awhile. He just loved it! He smiled, he coo'd, and he even giggled. It was a great time and we both enjoyed it very much. His oxygen was a bit low when I hooked him back up but it was not at a concerning level.
Jude had a pretty decent evening but he did require a lot of suctioning. He would start coughing and become very rattled so we had to work with him. During this time a nurse came to orient with us so she could work on Friday and Saturday evenings. This would give us a total of four nurses which includes his invaluable Charlotte which is his full time day nurse, Allen his weekend nurse, Mo-Gee his Sun - Thurs evening nurse and then we would have the new nurse on Friday and Sat evenings. That gives us 6-10pm everyday that we are caring for Jude on our own and we get some quiet time with him. So the nurse that was training stayed with us for about two hours. She spent about an hour with me and then an hour with Mo-Gee so she could explain what she does in the evenings. Since Jude's overnights are pretty difficult she had a lot to go over with her. She then indicated she could not work Saturday and I had mixed feelings regarding being alone with Jude. I have no doubt after caring for him for so many years I could be on my own. However as indicated this morning by someone Jude's care is pretty acute these days. So I put a call into the nursing facility. They then explained the new nurse wouldn't be coming at all because she found Jude's condition to depressing and overwhelming. She didn't feel comfortable staying with Jude. At first I was rather irritated because I believe nurses take an oath to serve. However, the hospice nurse pointed out my words from yesterday regarding Jude's situation. That even though this is our (yet again) new normal this is not normal for most. That many nurses would walk in and believe Jude should be in ICU, but you cannot live in ICU. I agreed and decided to be more positive and understand if she felt uncomfortable it's not the right place for her and Jude deserves the best care.
So we have a few options regarding nursing care on those particular days. The nursing facility is looking for someone else, we can take him to inpatient hospice for the weekend, or I can stay on the couch and stay up with him Friday and Saturday night. The latter is probably what will happen. I have no doubt I can care for Jude and I will do my best I can. Jude is still on antibiotics right now so we have medication naturally fighting any infection trying to attack his lungs. So right now we are primarily dealing with the chronic lung disease, anxiety, tone, and pain. I believe I can keep that situation under control. I am wondering how his body will react when the antibiotic is finished. Jude's overnight was again full of restlessness, hard coughing, and breathing issues. Mo Gee was amazing with him and worked for hours to make sure he was taken care of.
I am trying to be positive these days. Jude is with us and we get a few good hours with him everyday so that's great! I get a little irritated with people complaining about their lives or complaining about negative situations. I think to myself that they have no idea true hardship but then I remind myself that everyone is different. I have no idea what's going on in their lives and everyone has a different threshold and tolerance. So then I just smile and hope the best for them.