I’ll give you once guess - where are we now?

We’re home! It was a really great 44 days at Sanford but tonight we sleep in our own beds. Tonight we have a significant amount of toys everywhere in our house. Tonight the dogs lay at the foot of our bed. Tonight we fight over the temperature of our home. And tonight, we’re finally together again as a family of four humans and two pups. We are so excited!

We weren’t sure if Bodhi was going to discharge today. His blood counts are up and down and yesterday I woke up to the sound of liquids whooshing by my ear as Bodhi was on his hands and knees throwing up. We knew discharge was soon but to pinpoint a date isn’t that easy. Bodhi is on a break from rounds of chemo but still experiencing some side effects, (like not having much of an appetite), and his blood counts remain low, but stable. We had to learn how to tube feed before coming home and we also needed to make sure his throwing up episode was a fluke and not something more. 

To our knowledge, his vomiting spell was a fluke. Maybe he had too much volume from his feeding tube? Maybe he isn’t tolerating the new formula as well as the old (insurance is the boss of everything)? Or maybe it’s just a fluke. And we believe it is. He has been A-okay ever since and is doing well with the feeds. He gets three bolus feeds throughout the day and one continuous feed overnight. He’s eating less than he’s ever done before and we need to make sure he doesn’t lose weight. The feeds have been helping in getting nutrition and we think nutrition helps him heal. Hudson says he is strong because he takes “bitamins” so we want Bodhi to get his “bitamins” through his feeds. We need two strong boys! Heather and I have learned how to use the pump and as I lay here (or really as I roll back and forth because I have SO MUCH room in my own bed) there is an IV pump with a bag of formula near my head. This is yet another thing I couldn’t have fathomed I would ever be doing. But no complaints! People have had it much worse and as long as Bodhi is getting what he needs, we’ll do anything. Besides, we only have to use the IV pole overnight. He wears a backpack (yet again) for feeds during the day. 

Bodhi has been doing great and still has wicked locks of hair that stand straight up. He must think the higher the hair the closer to God or something. I know I thought that when I had 80s bangs until 2003. Both boys got a bath right after supper as they played with their Lego “ship” in the tub. We’re still careful with Bodhi because he can’t get his lines wet but he was so happy to splash around with Huddy. And Huddy ASKED Bodhi to come and play with him tonight!  What wonderful words to hear since these two often play along side one another. Hudson usually builds and plays precisely while Bodhi comes in like a wrecking ball and destroys whatever Hudson has made. Heather and I let it rain toys as we are just so excited to be home together. It’s the little things. Messy house? I’ll clean later. Kids screaming for attention? Here we are!

I say at your service lightly. Poor Bodhi wasn’t sure what to do when we got home. He wanted to play with his toys but also wanted us right next to him. And as we left the hospital, or packed to leave, he screamed his head off when sitting in his car seat. It’s like he was terrified and unsure of what to think. We hope things get back to normal soon before we admit for the next round which is already next Wednesday!

It’s off to bed we go! Except his feeding tube pump is beeping and I can’t figure out where it’s stuck. He rolls like an alligator while sleeping but this time it could be my heavy head! The IV pole has to be on my side of the bed so he doesn’t roll off accidentally. His side of the bed is near the wall. And yes, we co sleep and likely will until the boys are ready for their own beds. In the meantime, we will enjoy the little things - like those early morning lazy cuddles. 

Please take care and know we’re thankful for your support. We will post again soon and hopefully have pics of Bodhi being as normal as possible this week!