No, he's not awake. I just needed to see Daylon. Daylon without a tube sticking out of his mouth, without bandages covering his face, lying there in bloody drool. The days have turned into weeks and tonight I'm tired of it. Today has been an emotionally draining day and I want to keep this short to prevent myself from saying something I don't mean.
Biggest moments of the day:
-This morning when I woke up and called in to the nurse to check on Daylon I found out that they had taken him off the paralytic. Grrr. I would have gotten up in the middle of the night for that. Long story short, they're allowing him to make some movement (he's still sedated) in hopes that his muscles will start to push some of the fluid back into his veins so it can exit his body. They have maxed him out on the current diuretics and are desperate to get the daily weight gain under control. This needs to work...dialysis is back on the table.
- The Ronald McDonald house asked our family to be in a video that the company is making to help raise money for their charity. They filmed Brian and I interacting with the kids and then interviewed us. The interview was only 15 or 20 minutes but we needed to explain how living here has benefited our lives and the toughie:why we are here. We had to answer questions in this interview that I try to avoid talking about. It was very emotional for Brian and I. After we met with them, we took the kids out to the courtyard to play and we just stood there talking and crying. I'm sure my kids think we're loosing it. Mostly, it was crying because we are happy to have hope for child that we didn't think we'd get to raise here on earth. We feel blessed and so very grateful to live in this time where medical science is so advanced. When Daylon was born (just 12 months ago) there was nothing, no one out there who could help us.
Something you should know about me is I don't like to cry. Once I loose control of my emotions, I'm gone. Spent for the day. Seriously. Just ask Brian. I'm one of those bottled up people. Just don't pop the cork, you know? That being said, the next two bits haven't gone over well with me today.
- This afternoon Daylon's shirt and blanket were soaked and we needed to change it (we still have no clue why). Two nurses, a respiratory therapist (who's ok) and I gather around Daylon each with a specific task to get it changed out asap. So my job is lifting his body (RT has his head) and we NEVER lift him from his back, let alone his bare back, so I was feeling really nervous about getting under him to pick him up. I aquaphored up and pushed against the memory foam to get under him and when my hand came up to meet his back I felt something sharp. I pulled my hand back out and it was pretty bloody. I moved back under him and had to pull out (yes, pull out!) the sharp cap to the end of a syringe! It was embedded in his back, for who knows how long. We really can't move him much because of the internal blistering so I changed out his blanket 3 days ago! The sore is so deep. I can't help but be mad. I know no one did it intentionally, it was just carelessness. He laid there for days, in pain that I could have helped him with and I had no clue. Just sitting there, 2 feet away while he needlessly suffered. Ughhhh.
- Lastly, tonight just before Brian and I traded out I got a visit from Tim and Angelique (Bella's parents) and poor Bella looks to have VOD as well now. I can't believe this. I'm so crushed. We're living this crazy life and they seem to be experiencing everything we do. It's like our team's been hit again. Daylon and Bella just seem to be holding hands through this little journey. I like that I can see some of Bella's vitals on Daylon's monitor, don't ask me why, but it's comforting. Please drop Bella's family some lines of encouragement. I know how devastated we were to learn about Daylon's VOD. www.careforanabella.com
Well, I'm calling it a night. Guess this wasn't very short, huh? More tomorrow. Sleep well.