Week Three - Engraftment!

Week three and time started to drag on and being at the hospital started to really wear on us. The staff at Childrens are really great, but when you have a baby that is such a light sleeper, and there is a constant barrage of people coming in and out of the room interrupting naps and night sleeps, it gets old fast. I never felt alone, even overnight the nurses would check on him every couple hours as well as bring meds in and do vital sign checks. I forgot to mention in my last posts that Nate started taking night shifts after Bash got his NG tube inserted (about time!). We would switch off every two days, it was glorious to sleep in my own bed and be able to get a full 8 hours without interruptions! 

Day +15. Bash slept in until 9am! We went outside for lunch as the smoke in the air was clear today. Counts were starting to get low again and he may need platelets soon. He had a dressing change on his broviac site. One puke right before bed, otherwise a great day. This was also the day that news came out about two infants being successfully treated with engineered T-cells from another person, which is amazing! Someday, hopefully soon, we won't have to put poison into our babies to kill cancer. 

More of the same for Day +16. Sleep ins, long naps, and one small puke. Pass outside for lunch in the park. Counts were low but no blood products yet. Happy guy for the most part, tired and got cranky fast since his counts were low. NG tube was still in and working great, Yay! So much love for and from this kid! He amazes me. 

Day +17. Still at zero. Blood transfusions will happen tomorrow for low red blood cells and platelets. Bash seemed to be feeling better today and did lots of talking and playing. Thinking of decreasing his pain meds tomorrow to see how he does, hopefully we can wean him off. Bash got a book from child life today about Minnie Mouse and he loved it! This kid loves anything Mickey... I foresee a trip to Disney in our future. He also started sharing his food today, wanting us to have a bite between his.

Day +18 was a good day. Sebastian seemed a lot more himself. He got red blood cells and platelets, we decreased his morphine and can probably stop it tomorrow depending how the night goes. He was drinking and had some pizza, had loads of energy, and was talking up a storm. So good to see him feeling better! My superhero.

Day +19. We got a two hour pass and went to a park across from the hospital today, it was hot and we enjoyed sitting in the shade under some huge trees. Bash was feeling pretty good. We tried no morphine for the afternoon but by bedtime he was fussy. He skipped his nap and did not want to go to bed in the evening. Had loads of energy probably from the blood he got yesterday.

Day +20 and we have white blood cells!!! They are very minimal and his numbers may go up and down but doctors said they believe we have started engraftment!!!! Finally! Sebastian has been feeling great and his little goofy personality is out in full. He had a good sleep overnight, woke happy, played, talked, and had us laughing all day. Still not quite weaned off the morphine completely. Had a visit from music therapy today too. Love you Bash ❤️ Bring on the sunshine! 

Day +21 and Bash's white blood cells rose to 0.3! We weaned him off morphine for the day, gave Tylenol at bedtime, and hopefully won't need it overnight. We had a pass outside for lunch and got to keep him off all his IV lines and NG feed for the afternoon. The freedom from all those lines is so awesome, you would be amazed how fast he can get them all tangled up. After our pass outside we had a visit from some of the Stampeders! Bash got a signed football and we got a picture with them. Keep it up bud!