Day +55: just thinking out loud

Daylon laying on a new blanket to help with his fever and his nurse, Rich plugging in the blanket

I know this is a blog that is open to anyone in the world that wants to read it and I think about that a lot. I decided to start this blog to keep our family and friends in the loop (because to be honest, I hate repeating a horrific story a thousand times with that burning lump in my throat. Not to mention, I'm not exactly an open book.) but it's become a therapeutic journaling session for me too. The thing is, I have to force myself to be positive because I know our moms and aunts (and Daylon's aunts) are going to read the post, and I hate when they cry. If I didn't blog, I would sit here and worry about the worst possible scenario and feel trapped by this tiny dungeon that is room 403...I'm a mom. That's what we do. We all have doctorates in "Worry and self guilt". It may take me 3 hours to finish my post, but I will see the light at the end of the tunnel, and I will hit the "Publish Post" button feeling better about life. So, that being said, I have a feeling that tonight's post will be a bit of a ramble, but no worries. We're still hopeful and things are still good. My mind is so full of thoughts and I'm unable to organize them. I'm just going to let them bubble over the top and spill out onto the keyboard. Hope it's not too dramatic.
OK. Here we go....
Today was a crummy day. Wednesday was supposed to be our big moving day back to 5D, but that's not happening. The past two days after dialysis Daylon's heart rate climbs and climbs and his blood pressure just falls and falls. His heart rate will just hang out in the 180s (instead of 110s) and he's needing 2 blood pressure meds to help keep his blood pressure up. He's also been running fevers from 102F to 104F for 8 or so hours after. Question: How do you go from a 103F to 98F just because?...for several days! Not one single blood test has come up positive for a bacteria or fungal infection. What gives? No one has any clue what is going on. He's on 4 antibiotics and it's the same thing everyday. So weird. Plus, in the last 36 hours he has had huge out-of-diaper diarrhea episodes. The kind where you have to change out bandages and linens. Not fun. Anyway, he's requiring one on one attention from his nurses, so we'll have to hang out on 5C a bit longer.
This blanket has temperature regulated water being pumped through it to help lower Daylon's fever from 104.2F

Today we also found out that our stay here in Minneapolis, will be for quite some time. Our day 100 is October 2. Providing Daylon is in good health, day 100 meant "Good-bye, Minnesota!"! Well, the BMT doctor today said that she thinks that quote: "Maaaaaybe you guys can go home in time for Christmas. Dr. Tolar is very conservative though, so who knows.". Oh. My. Goodness. That one felt like someone hit me with a pillowcase full of bricks. Minnesota is great and we absolutely love the Ronald McDonald house, but I want to go home. I want to go back to real life. I miss my crazy, run around town with five kids who need a nap in tote life. You wanna hear something crazy? I miss palm trees. I love these gigantic mature trees up here, but those ugly ol' palm trees mean 'home'. I know this is becoming a rant and I'll stop soon, I promise, but! DO YOU HAVE ANY IDEA HOW COLD IT GETS UP HERE!!!!? I've had nurses tell me -40! How am I...what will we.... I just...ahhhh. Idaho was -20 and it was painful (literally) to go outside to get the mail without 5 layers of clothes. I can't even imagine. You'll hear more about this in a few months. I guarantee it. :)

Lastly, things are weird with Daylon. I know he's on a lot of drugs still for sedation and pain, and from what I hear, he's still got a ways to go before he's off. He's also going through withdrawls and recovering from a six week muscle sabbatical. Still though, I'm getting worried. Daylon is like a giant limp noodle. I knew that he wouldn't have much muscle control, but he's not even close to being the same kid. He doesn't smile or laugh, he'll stare at his mobile and these little lights we can put on our fingers, but he doesn't really have an interest in toys, and sometimes I wonder if he knows who we are. He stares so much of the day at the ceiling or sprinkler or something. Sometimes I think he responds to Brian and I, but then there are times like tonight where I lift him out of bed for a moment and his head just falls to the side and he stares blankly at nothing. I started talking to him to get him to turn his head towards me (he turns his head all day long, so I know he's capable). Nothing. I stated calling his name. Nothing. One last attempt which was kind of a sing-songie vocalized prayer, "Daylon! I need to know you're in there. Respond, Son.". I'm not sure if it was Daylon taking the 90 seconds he needed to gather his strength to respond or not, but I felt like it was a divine moment. Without moving his head, he looked at me from the corner of his eyes. It was only a few seconds but I really needed that moment of eye contact. I was having a bit of a panicky moment. I've really tried not to think about the what-ifs of Daylon's neurological well being, but tonight I had such a hard time trying to force them from my mind. I think the events of the day just weighed on me and I was starting to crumble. The day was busy and instead of praying for comfort, I let worry fester. I feel that Heavenly Father heard my little prayer, knew what my concern was and answered my prayers. It was a reminder that the road is there, it's just a long one. Once again, this blog has come to my rescue as a therapy aide! Things start to make more sense when I write them out and the blessings of the day become so much clearer.
Thank you for being our friends and readers through all this. Thank you for all of your prayers and well wishes for Daylon! Sweet dreams!