First off, I want to apologize for not writing sooner especially after such a scary post for our last entry. I have legitimate reasons, but who wants to read a bunch of excuses! So....
Overall, Daylon's life has been better since he's been on the ventilator. They can give him as much Morphine as he needs without any worries of him not breathing since a machine is doing it all for him. They can gauge it off of pulse and blood pressure. There was some concern yesterday that the mucositis had traveled into his lungs. Today, however, things are sounding better and since that kind of swelling can't go down in a day, his lungs probably aren't involved. Whew! We were pretty nervous about that! Daylon gained almost 2 lbs yesterday and his poor little body was blister central!! He's lost 1/2 lb. today thanks to a new diuretic that has been added to his towering IV stand. Hopefully over the next several days will see regular Daylon appear! He's not blistered today nearly as bad as yesterday so that's wonderful news. His heart rate is in the 120's at the moment from the high 160's yesterday. He had a Vac Holiday today (were they turn off the meds. to see how long it takes him to start to stir) and he started to move an hour in. That's just where they want him! More good news you ask? Why certainly! His fever is FINALLY being managed by the Tylenol!!! He's at a cool 99 degrees right now. I wish they could have given him Motrin, but apparently it lowers your platelet count so it's out for the next two years! Yikes. I love that stuff! It's the anti-fever's best friend. Today has been a great day for Daylon! What a blessing not to see him suffer and to feel a day were you can breathe a sigh of relief.
Brian and I are dealing with the situation fairly well. Of course, days like today make it easier. I know it might sound crazy but I do miss him. I'm sitting 18 inches away from him for hours on end and yet when I go to sleep I can't help but feel like I haven't seen him in days. This coma thing makes him physically here, but that's all. I can't wait to hold him. Today when I went home to the RMH for a quick sec. I ran into Cowboy Danny's parents (a little boy a few rooms down with cancer) and they asked after Daylon. When I returned the question they told me that their son had just passed away. There's so much hope here at such a wonderful hospital, but inevitably, there's also death. They told me to tell Daylon to "fight and never give up". The mother also advised me to take advantage and hug and kiss each of my kids goodnight. When I returned to the hospital I wanted so badly to pick up Daylon and rock him, but for now, that will have to wait. We are blessed to have enjoyed our day with our son.
I've really felt guilty the last week that I've spent so little time with our other little guys. I've felt like I couldn't leave Daylon for fear of something happening. Yesterday, Brian encouraged me to visit with the kids in the afternoon. I planned out a picnic at Lake Calhoun. The kids and I had such a blast! It's one of several lakes around here called the "Ring of Lakes". We had a picnic, they played at the playground (a cool boat shaped playground that the kids went nuts over!), and we dipped our feet and splashed a bit in the cool water. Afterwards, we went for a walk around part of the lakes. What a view!! Minnesota grows on me more and more everyday. It's such a beautiful state! There were tunnels and rolling grassy hills, flowers and sail boats everywhere you look. Very picturesque. We just wandered around enjoying nature and each other. Moments like that with my kids makes my life feel so full. Daylon and Brian being with us would have made it absolutely perfect. Things to look forward to, right? On the way home the kids and I were listening to the radio and a favorite song of theirs came on. I looked in my rear view mirror to watch their four little heads bobbing along and rocking back and forth as they belted out "Soul Sister". Those four little voices reignited a part of me that had pretty much burned out over the last month. So, I did what any parent would do: I turned it up and sang along. Life is good.