Week 5 and 6 - Hurry up and wait

The past week and a half has been a lot of waiting around. The fever Bash had was caused by a bacteria and the antibiotic they started him on ended up being the right one to treat it. The course runs for 14 days total, every 8 hours, so he's on it for another 6 days (finished Feb 17th). It's really the only reason we are stuck in the hospital - I'm sure we would have been discharged for a few days while we wait for his counts to come up. His blood counts have been steady but neutrophils are not increasing because of the infection, and we can't start the next phase until his counts are better. Doctors think they should start increasing after today and hopefully he will be ready by next week.

Currently he only gets an Enoxaparin needle twice daily for the blood clot in his leg (that is being reassessed next week to see if it's still present), Fluconazole as a preventative med for fungal infections, a mouth rinse 4 times a day, and Vitamin D. His spirits have been up and he's such a happy little dude! He always has a big smile for anyone who comes in the room. He's fascinated with the cleaning staff wiping everything down, mopping, and the sounds a fresh garbage bag makes. Dr. Celia comes by to assess him each day and said he's the best part of her day. She says his smile makes her so happy and that all the nurses just adore him, he brightens everyone's day!

This week he started feeding himself off of his tray and has become selective in the foods we give him - he doesn't want 'baby food' anymore. He prefers to feed himself, and anything on the spoon he grabs and inspects before putting the spoon in his mouth 'on his own'. He is very interested in textures like muffins, bread, and cookies. His favorite is still ice cream (thanks grandpa and grandma!), and he enjoys avocado, banana, and sweet potato. His appetite has definitely decreased since being off of the steroid but his weight has remained steady.

He is starting to lose some hair on the back of his head and I'll probably take a snippet for his baby book in the next few days in case it does all fall out - our Oncologist was surprised he still had his hair when she visited him last Sunday. He's had some bad skin breakdown on his bum from the chemo meds and it is quite an ordeal to change a diaper. We have to wear gloves as his pee and poo are filled with chemo and are toxic - even 5 mins of him sitting in a wet diaper with no barrier on and his bum is red and raw. When we change him it is a three step process - Cavilon wipes which are sticky and then dry into a film to protect skin from moisture, then Stoma powder to help absorb any moisture, then Triad cream (zinc) as another barrier over both of those. We only use soap and water on the dry wipes they provide in the hospital, the sensitive skin wipes we use at home irritate his skin. We have to let his bum dry first as the barrier used to protect it can also cause breakdown if there is any moisture left. This has led to a few 'showers' all over his crib while he airs out. The 3am diaper changes are so much fun lol!

He's been working up to crawling for the past few days and its so funny to watch him try to figure out how to get around. We have a giant mat in our room we can let him play on, don't worry I'm not letting him play on dirty hospital floors :)

We are still getting daily passes after his 2pm antibiotic and its so wonderful to take him home, even for just a few hours. Shout out to all the people who have been making us meals as when we are home we can just toss something in the oven and not worry about cooking or prep work - it lets us spend this free time to hang out with our boy - we appreciate it very much!