Jude has been up since about 5am coughing. His oxygen levels wouldn't stay up but primarily he was just having a hard time with congestion. I went to check on him with the night nurse and Jude did smile at me. Our night nurse made me laugh because she said I always "sleep walk" in the room to check on Jude and she knows I am just tired. So we lost our weekend night nurse. I explained in a prior blog she just no showed two nights in a row. This made me sad because I really liked her and she seemed very efficient with Jude. However if she could no show on a little boy that is so sick two nights in a row then she probably didn't care that much for him. So luckily the fabulous Cynthia has been filling in and I hope she can continue to do so until they locate a new weekend night shift. We are so lucky that we have had some very good steady and loyal nurses. I cannot imagine dealing with this all the time so a big thanks to Charlotte, Allen, and Candice! I think we are a pretty good family to work for. I have my flaws but don't we all? I am really concerned about having a night nurse the weekend following Thanksgiving. We will be in Houston watching Emily compete and Jude is going to stay at the hospice house. Allen is going to work long shifts to make sure Jude always has someone with him but he will have to have a night nurse there 9-7.
So it makes me sad that we will be putting Jude in the hospice house for the weekend mentioned but I have finally reached a point that I understand it's what is best for him. Having him ride 5 hours in a car sitting straight up while he gags on congestion for my benefit isn't fair. I sometimes long to have a regular family time so much that I think that interferes with proper decisions. The guilt of not bringing my child with me on a weekend get away also clouds my judgement. However I also owe it to Emily to support her in the one endeavor she has held fast to and to be there for her. It's hard though I won't lie. It takes a lot of mind control to understand the situation at hand. Jude needs a lot of equipment and medical intervention so being in a medical surrounding is what is best for him. So I am going to be his nurse on Thanksgiving to free up hours for Allen to be with Jude from 7am - 9pm everyday. Allen adores him and will take great care of him.
I have to admit that even after 7 years I still struggle with watching the normalcy in other lives on holidays and vacations. It does sting a little bit. I thought about loading Jude into his wheelchair on Halloween and rolling an oxygen tank behind us so he can participate. Then I stepped back and realized yet again that would be for me and not for him. Jude doesn't need to be out in the night air, he doesn't need to be exposed to other germs, and I know in my heart Jude would rather be at home. So we will celebrate in our on way.
It's still a struggle. So to the moms and dads that are just receiving a special needs diagnosis know that your feelings are normal. Even after all these years I still struggle some.