Wednesday, May 6, 2015

Mothers day drama and Jude's hospice visit

The hospice nurse came by last night to evaluate Jude's condition. He had been very lethargic or sleeping all day. He is sleeping a lot more these days. She said she believes this could be a natural decline in Jude's condition and told me what we will probably be seeing over the next few days or weeks. She said his oxygen levels will most likely start lowering and our new normal (there is that phrase again) will range between 90-95. I asked her about the oxygen/heart monitor and she said eventually we might just decide remove the monitor so it doesn't drive us crazy with alarms. She asked if I was still working and I nodded my head yes to her. She just shook her head and smiled at me. 

Jude's vitals actually look pretty good. His oxygen is running about 95-98. His heart rate is high running between 140-160 but I am assuming that's because his body is working harder. His color is good today and I got a small smile after much coaxing this morning. Charlotte said she was getting him up today to shower and then putting him in the wheelchair. I will be interested to know if he stays awake and happy or if he drifts back off to sleep again. Charlotte mentioned this morning how a year and a half ago Jude's breath sounds would have landed him in the hospital. However today we are just happy to hear air movement in his lungs. 

I dreamt of my children last night pretty vividly. I was chasing Emily and trying to keep her safe. Poor Emily she probably feels like I smother her because I worry so much about her driving and being a young adult. Letting go of one child into the world while trying to let go of one leaving our world is taking a toll. For the first time my dreams of Jude were peaceful. He was laying in his bed and I was talking to him softly telling him that everything will be okay. I dreamt I was stroking his hair and he looked so calm and sweet. I think these dreams were sparked because the hospice nurse was reading over the notes and one of the nurses had written "being held by mom is very effective". She was referencing trying to calm Jude's condition and making him feel better. 

This morning I saw an ad on Facebook from WFAA news. They were asking moms to post their mom moments and tag them at #wfaamoms. I wondered what I would post if I was going to participate. Would I post a great picture of Emily and I on some pageant excursion or one of Jude when he was little and healthy? What if I posted what some moms that are now in a different demographic actually go through? No one wants to see a sick child on a holiday but maybe it would be a reminder to moms to love and appreciate their children a little more that day. It's been a week of reminders with Jude. I walked through the boys aisle at a store and had a flash of emotion involving anger and sadness as I looked around at all the items Jude cannot use.  The mothers day gifts flooding the aisles also made me a bit sad.  These commercialized holidays have a way of stirring emotions. However I am also grateful. I am grateful for this time I have with Jude and that I have an amazingly beautiful and healthy daughter who shares this life with me. So for the moms out there who can no longer hold their babies I am truly thinking of you this week. 


Reagan Leigh said...

Just wrote you a long comment but I think it disappeared into cyber space when I hit publish! What I was saying is instead of taking his monitors off altogether, raise or lower the alarm settings to his new normal. I do this with Reagan on her bad days. Raise the heartrate settings to the 190s or 200 and lower the O2 settings to 85 or 90. That way you will still be alerted if they change drastically but it keeps them from going off nonstop when he's (relatively) stable.

Cjengo said...

We talked about that too :). They have to come in and set the alarms because we don't have access to them. It's probably what we will do.