I had a horrible allergic reaction to something last night. That's one of the negatives of living in the great state of Texas....allergies. There are many amazing attractions in our state but the massive amount of pollen occupying the air is not one of them. So with swollen eyes I went to lay down about 10pm and Mike took the first shift of "Jude watch 2015". Mike said Jude was pretty quiet and was comfortable in his bed until about 2am. I heard Jude coughing without a break so I crawled out of bed to find out what was going on. Jude was encountering his normal respiratory issues and he was giving Mike a few fits. It took about 2 hours of getting Jude under control but with breathing treatments and medication he finally fell back to sleep. So 4am was Jude's night night time yesterday.
Today a nurse came to interview to work here next Friday and Saturday night and I really liked her. I point BLANK asked her if she had an issue working with a child that was so ill and she told me she didn't. She is an RN and seems to have pretty extensive experience working with acute illness cases. She even scooped Jude into her arms and gave him a hug. So next week we will have nursing around the clock except for 5pm - 10pm each day. I know Jude has a group of great care givers lined up. Jude comes off his antibiotic tomorrow and there is a part of me that already wants to cry. I want Jude to be healthy without any further medical intervention but I have the education to know that isn't possible. So I am going to hope that Jude will continue to do as well as he can. Tonight I unhooked him from everything again and he was so adorable. We sat and sang "Hey Jude" while we watched "Across The Universe" together. He would smile every time he heard music and without inhibition I sang at the top of my lungs for him. When I put Jude back in his bed he was so tired that he immediatly fell asleep or it could be that I sang so poorly he decided to pretend to sleep ;).
I have a few friends that are in need right now and I have no doubt I am saying the wrong things to them to try to help their pain. Despite the front I put out there I am struggling and I do mean really struggling.........probably far more than you think. I am so very very tired and I just want to spend time with my son. I don't have it in me to take care of anyone else like I normally do and I feel so guilty that I don't have it in me. I cannot watch my words, my thoughts, or my actions right now. I also want to make others feel better in their times of need but I have little reserve to dip into. It's so not me and I am struggling. It's reality and reality is something I always swore I would post on my blog throughout our journey. For anyone else going through something similar my cousin said it best. No one will blame you for any thoughts you have whether they are negative or positive ... in fact it's just better to get them out. I know I am battling a little depression and I think that's probably pretty damn normal when your child is so very sick. I can deal with it and I will deal with it! I will get myself up day in and day out and function like I need to for work, home, and to make myself a better person. At least when I hold Jude or spend time with Emily my life is so much brighter and has amazing purpose.
So if you feel I don't have time for you or say the wrong thing to you just know it's not intentional. Also know when you tell me "I don't know what to say" that I take that to heart and will hug you for being honest. No one expects you to say anything. Jude is here and he is happy when he is awake. He still has considerable respiratory issues but we are learning to control that with medication and positioning. He loves being at his house and in his little bed that is set in our living room with his family or nurses always around him. That's what's important.