March 13 - Adjusting!

We were able to leave the hospital with Oliver for the first time on Tuesday. I'm sorry I have not been keeping you posted, we have been super busy adjusting to having Oliver 'home' with us. Sean and I learned how to check his feeding tube placement, how to use a gravity bag and feed him with it, how to give meds and how to flush and lock his PICC. Everything has to be incredibly clean when you are working with the PICC line since it goes directly to his blood. The first time I flushed the PICC I accidentally pushed a little air into the line. Instinctively, I pulled back on the syringe a little to pull the air back out and to my surprise the line immediately filled with blood! I looked at Sean with shock and horror in my eyes...and he just stared back as if to say 'what the hell just happened!' I finished flushing the line and called the hospital immediately to see exactly how bad I screwed up. The nurse laughed and told me to take a deep breath, that it was not big deal. I think that experience took a good 5 years off my life! Sean flushed the PICC the next time and he did a beautiful job...maybe he should be a PICC nurse!

I spent the afternoon yesterday organizing Oliver's medical supplies. This experience is so different than how I imagined life with our new baby. Sean and I can only laugh when we think back on our fantasies of what life was going to be like when our little bundle of joy arrived! Through all of this Oliver has been a great baby! Seriously, he is really, REALLY good at being a baby. He knows how to get our attention if he needs something. He is nursing well most of the time. If he is too tired he gets frustrated and won't latch, but he is only using the feeding tube a couple times a day. He sleeps good 3-4 hour stretches at night, and if he is dry and full he is content! He still likes being swaddled, but is using the swing less and less. He has only ridden in the car once and he fell asleep immediately. He is a pacifier junkie! Sometimes he is working so hard at sucking on the pacifier you can hear him from across the room! We constantly marvel at how sweet he is! 

Oliver had platelets drawn yesterday and today. Yesterday they were at 10,000. Today they were less than 5,000 (the machine doesn't pick up anything less than 5,000) so we are going back to the hospital this afternoon to have a platelet transfusion. His other blood levels look good today. Even though Oliver is out of the hospital we still spend a decent amount of time there. We were there from 9:00am-1:00pm yesterday for labs and to meet with people from Oliver's team. This morning we just had labs but will go back for the transfusion. Tomorrow we have to be there at 7:30am and have a full morning... I don't think much happens on the weekends so we might get a couple of days of down time and then he is scheduled for a dose of chemo on Monday. It is difficult to understand why we are keeping Oliver with us instead of at the hospital when he still needs so much care. We were told that his risk of infection is lower at home (Ronald McDonald house) and that he is more likely to thrive in a home-like environment. I hope that's true!

 Sean and I have met a few other families that are staying here-it's nice to visit with other couples who have children going through similar treatments. Almost every kid here has a feeding tube, and PICC lines are common. Everyone is aware of germs, so people already know not to touch Oliver-or even breath on him! It's been nice having other parents to chat with during meals and not worry about having to explain why they can't come within 10 feet of our baby :)

 Well, as we settle in I hope to make updating the blog part of our daily routine. Please forgive me if I choose nap over blog! I promise not to go too long without posting! :) :) :) Love and blessings to all!!!