Monday, December 13, 2010

So Grayson is getting a 2 hour dose of a chemotherapy called Busulfan every 6 hours so at every 5:00 and 11:00. The entire day he seemed to handle the chemo well. He didn't seem any different than normal. We had a nurse named Kasey who is my new BFF because she looks like me and Grayson lets her hold him without crying!

Grayson is cruising (walking with help) and hates being penned in our room. It is definitely hard to keep him occupied in a small space for hours during the day. We brought a play mat and some toys but he wants to walk all the time. It takes two people to walk him because one person has to hold his hands and the other has to push his IV pole. Because I am here alone with him, I have to recruit the nurses to help me. It helps that all the nurses think my baby is the cutest baby ever and want to come play with him all the time. I should probably mention that he is also the only baby on the floor but that does not discredit his cuteness. Kasey was great and walked him for laps around the oncology unit which he loved! She also snuck us some toys from the playroom which is normally open for all the kids on the floor but closed for two weeks to prepare for Christmas which is supposed to be a pretty big deal on this floor. There was a little boy about a year older than Grayson named Matthew (Matty) that left the unit the day after we got here but before he left he gave us two things. A little Christmas tree that is adorable and doubles as a night light and a special wrap for his tubing that holds all of his tubes together to make them more manageable. (Think of one of those covers that keep all your electronic wiring wound tightly together).  Pray for Matty please. He has AML and none of his 3 siblings were a match for BMT so he did chemo instead. He and his mommy were in this unit for 6 months and they are finally going home. Please pray that he does not relapse and will remain healthy.

Grayson still nurses which is good because his appetite for table food hasn't been great lately. You can tell by his size that the kid is normally a great eater and loves all food. The fact that he hasn't wanted table food has been concerning for me because I know it’s not typical for him. He has still been nursing regularly though. At his 5pm dose on Monday he started to cough and gag a bit but no vomiting. I wasn't sure if it was from the chemo or if he just simply coughed and gagged (babies do that sometimes). After he did it a couple times I was suspicious but remained hopeful that he would not suffer like the doctors said he might. At the 11pm dose he really started gagging and refusing to nurse. My heart sank because I wanted to comfort him and I couldn't at that moment. However his nurse Sam came to his rescue and gave him a drug called Adavan. Thank you Lord for this wonderful drug that made my baby feel better and let him sleep through the night. I also want to thank you for the wonderful nurse named Sam who despite being in our room several times through the night, never made a sound and took Grayson's vitals 2 times without waking him up! I really loved her.