Well, that was fun...

Hey everybody,


Time for an update on how our little Levi is doing. As you know from my last post, Thursday was a rough day for him. His blood pressure was bottoming out, and his fevers were spiking – some of the highest fevers we’ve seen yet. They did end up admitting him to the PICU, although they were able to keep him in his normal room (the PICU rooms start two doors down from his, so it didn’t make much sense to physically move him). They were finally able to get his blood pressure up a little with some medicine, and his fevers started to edge down a little. It was a little scary there for a while, but he stabilized later in the afternoon. I had a CMA chapter meeting after work, so Caylee and I headed down after that. It was a late night, but I am glad I was able to come down a day earlier than originally planned. A big thanks to the Bennett’s for watching Caylee and Steph’s mom and dad for coming down to the hospital to stay with Steph and during the day. I have to admit, it was a little unnerving to see a crash cart in the hallway outside of his room when I got here. We definitely had a sick little boy on our hands.


Yesterday things really started to improve. His fevers were still there, but were low-grade. He started perking up a little, and while he wanted to nap or snuggle most of the day, he did get a little of his ornery personality back and started flirting with the nurses again. It’s pretty cute to watch him blow kisses to them and wave goodbye when they head out of the room. We all caught up on some much-needed napping throughout the day. He did eat a little bit of cheese and some popcorn, and drank some of my Diet Coke and some yogurt juice. His appetite wasn’t all the way back, but it was encouraging to see him eat and drink a little. We had a pretty slow day around here; I ventured from the hospital only to find food later in the evening, which probably wasn’t worth it considering the roads were solid ice. But my stir-craziness and craving for wings fueled the adventure.

Levi continues to improve today. He is pretty cranky, but I think he is starting to feel well enough to realize he doesn’t feel good, if that makes any sense. He walked around the room a little bit, jumped all over us in bed trying to wake us up after some early morning cuddling, and managed to completely deconstruct a small tub of toys. He hasn’t eaten anything yet today, but I am hoping to get some food down him for lunch after he wakes up from his nap (he and Steph are both passed out on the bed right now). They have given him plasma, platelets, and blood, the combination of which have helped him bounce back. They are continuing to take blood cultures, but we don’t have any results back from yesterday’s. We hope that they start coming back negative soon, which would mean that we could plan on weaning him off his antibiotics within 10 – 14 days. He did not have any fevers throughout the night, and his blood pressure has been stable. The plan for today is just to get him to eat and drink a little and make sure he catches up on sleep. His counts are going down, but haven’t bottomed out yet. Once they bottom out, then it’s the familiar drill of waiting for them to start climbing back up.

When Steph talked to the nurse on Thursday night, she mentioned that this is what they expect every round for AML patients. Additionally, they were surprised that Levi had been able to keep his central line in since last July 5th without having an infection. This really helped put things in perspective for us – at least we know that Levi’s little scare wasn’t something out of the blue. It also made us that much more thankful that Levi hasn’t encountered some of the nasty side effects that are so common with this difficult course of treatment. We’re also thankful that the problems he is having with his central line are occurring during this fifth and final round, not during one of his earlier rounds. If it occurred earlier, they would have likely had to replace the line; now, however, they will just wait and take it out after the round is over.

Steph and I want to thank you all of your persistent and faithful prayers, especially during the last 72 hours. It was scary, but our God is stronger and continues to answer prayers. Please keep little Levi in your prayers as he battles this infection, and pray that he regains his appetite so they don’t have to put him on TPN for nutrition. Also, please keep our little Caylee Grace in your prayers, as she apparently caught the nasty stomach bug that is going around and is hunkered down with Steph’s parents and a trashcan trying to feel better. A special thanks to Linda and Larry – we really appreciate you taking care of her and loving on her as she doesn’t feel good.

Oh yeah… One final note… Did I happen to mention that as of yesterday around 9am, Levi is DONE WITH CHEMO?!?!?! It hasn’t sunk in all the way yet, but it does bring tears to my eyes as I type it…

We love you all,
Michael, Stephanie, Caylee, and little Levi