A Friday night update.

Jude looks better and then he doesn't look better. Tonight Mike asked me if I thought Jude was turning the corner and I told him "I thought so but then last night Jude looked a little pale". I am just confused with his situation so I choose to hope for the best. I choose to believe Jude is getting better! I tried holding Jude tonight for awhile........I unhooked the oxygen, his feed, and the o2 meter. I settled myself into the couch with Jude and began kissing him on his forehead. I smelled his sweet hair and watched his little dimple on his left cheek rise when he saw me. He even started giggling but then Jude began to look very tired. We hooked his o2 meter back up and he was at 86 then 84. So I just kissed Jude, held him tightly, and gave him back to his dad to put him back in his bed and we secured his face mask. Soon he was back at 98 on 6 liters of oxygen and 143 heart rate. We see glimpses of Jude immersed in our new normal and we are forever grateful for his smiles and giggles. Jude strains his neck when he hears us talk and he has started searching the room for the ones he loves again. He is just so precious and he just loves being around family.

It's hard for me to talk about this next section of the blog without giving away those who might have had these thoughts. It's been pointed out to myself and my family that sometimes we look tired, sad, negative, or angry. Our normal everyday expressions seem empty or spaced out. Understand that it takes every ounce of energy sometimes for us to keep putting one foot in front of the other. I think I have reached the point of exhaustion. Today I felt so tired at the courthouse getting Emily's passport that I thought I might pass out. I have NEVER felt like this so I gathered myself up, took a deep breath, and told myself to get it together. Emily is the same way even though she puts on a very good front. She hears what goes on at night and she gets woken up constantly but she hides it very well.

I haven't heard from hospice, from the nursing agency, or from anyone I thought that could help in these days. It's not their fault. I know they have so many patients and I sometimes feel like I am such a nuisance when I call agencies. I have never been through any of this before but I know I am so tired and so is Jude. Hell for all I know he may be decent compared to other people in his situation. However he was up again at 2:30 last night and never went back to sleep. Yes, I know prednisone causes sleeplessness I had to take it to bring my platelets up when I was pregnant with Jude. However this is just Jude's new life. He needs constant suctioning and more to keep his levels normal. I do NOT need anyone's pity I am so happy that Jude is still with us. I do however need to share our experience so people will understand and can relate when they need to. I need to tell people that if I or anyone else in my family looks upset it's because we have a lot going on. If I skip out on a event or function it's not you it's just me being selfish and I just need to bypass that situation. Hopefully you understand. Tomorrow is Jude's last dose of the steroid and then we will watch with hopeful hearts that he will continue to improve.