Week Five - A Rollercoaster Week

Nearly a month and a half in the hospital. Days have melded together and we are lucky if we know what day of the week it is. Nathan's parents stayed with us this whole time and were such a big help! Nate and I got some much needed 'time off' for ourselves in the afternoons, lunch and dinners made for us every day, and a clean house to come home to in the evening for whoever's 'night off" it was - it was really amazing and we are so lucky to have such great support from them. They ended up going home for some much needed R&R for a few days, and came back the day we were discharged home.

Day +29 and Bash's counts jumped up again! He started the day out with a rash/hives, doctors didn't think it was a graft vs host rash and Benadryl seemed to do the trick. If it was GVHD Benadryl would have done nothing. We had an afternoon stroll outside after the rain quit and walked around the unit to help with 'cabin fever'.

Day +30. How is it we've been in the hospital so long already?! (39 days but who's counting). Today Bash's counts went up again, his absolute neutrophil count was 2700! Normal range is 1500-8000. We had a 2 hour pass and went to a nearby park with uncle Jerrad. Bash started testing us the past few nights with bedtime and not going to sleep. Hoping it's just a phase and not med related. Going to ask the docs 'when can we get outta here?!' tomorrow as we are all ready to be home.

Day +31. Bash had his last IV medication switched to oral today! The only thing left hooked up to him is his NG feed which he gets 4 times a day, and he is unhooked otherwise. We got a pass and went to the park again. Still fighting bedtime and going to ask tomorrow if this could be a medication side effect. I tried booking a last minute maid service as tackling cleaning the house before Bash comes home seems daunting. I ended up putting a call out to some wonderful friends who were all able to come to my rescue at the last minute to clean our mess! Thank you, thank you, thank you!!! I am so lucky to have such great friends in my life who at the drop of a hat were able to help in a pinch - I'm not worthy and owe you guys big time! Still amazed every day by the love we are surrounded in. You're doing great baby, we love you!

Day +32. Great day, good numbers, Bash is taking all his meds orally, and he's taking bottles in place of his NG tube feeds! What does this mean? His NG tube might get taken out tomorrow before we are discharged home!!! That's right we all get to sleep in our own beds under the same roof tomorrow! What an amazing rock star kid! And the sleeping at bedtime remains the same, and is unfortunately not med related, just a phase.

Day +33 and we are home!!! It's been an amazing and surreal day. Sebastian loves being home and having the room and freedom to crawl around and check out all his toys. We had a BBQ and Bash actually went to bed at a decent time. At bedtime he downed his bottle so fast that everything came back up, including his NG tube. Thankfully he is taking bottles, we aren't worried and may not need to put it back in. So happy to all be together! We still have a long road ahead of us but the road to recovery is so far sunny and warm. So much love for you little man we are so excited to have you home!

Sebastian started Day +34 with low grade fevers off and on. We think he is teething and debated whether we needed him looked at. We ended up calling our Oncologist and he wanted him in for a checkup. Bash spiked a temp of 38.2 during checkup and it was decided to admit him and start fluids and antibiotics as a precaution. Blood cultures were taken and as long as nothing shows up in the next 48 hours we will hopefully be discharged Saturday night or Sunday. Better safe than sorry, just a few more days as inpatient. Being home for less than one day was such a tease. We'll get there buddy! 


In the hospital for Day +35. Bash continued to spike fevers overnight and temp was 39.4 this morn. His blood cultures showed an infection and docs added another antibiotic to his mix. We will be in the hospital for at least two more weeks for antibiotic treatments. You wouldn't know this kid is sick though, he was flirting with the nurses and even blew a kiss at his doctor today!!! What a little ham! He loves the attention. A small bump, the suns still shining bright though.