Day +7: The Blob

Kal was really restless last night. He would just wake up crying/screaming for a few minutes, then doze off again. This was happening throughout the whole night. Finally, around 5 a.m., the nurse decided he was so uncomfortable that he could use some morphine to help take the edge off and let him sleep a little more restfully.

Later in the morning, he was still super sleepy. He would have moments where he would wake up again and scream, cough, and/or puke mucous. Then, the next moment, he would drift off again into sleep. Getting some benadryl helped lull him back to sleep after that. Basically, the majority of our day was spent with this sort of cycle.

Around 11 a.m. or so, we decided he would benefit from some more morphine. P.S. Can I just say how weird it feels to request morphine for your child, especially your baby? I mean, that's really what all the other BMT patients end up being on for a little while, but I guess hearing of how strong it is and how people must be in excruciating pain to get it, it's just hard to know how much pain Kal must be in right now. Seriously, not only does he have mouth sores that are getting worse (and will continue to get worse for a little while), but he most likely has those sores all down his throat and in his GI tract. On top of that, he's not eating, yet still throwing up mucous and bile, which would definitely burn his throat coming back up as well. :( I've lost track of how many times he threw up today. I'm just too tired to count that now.

Today, he slept a lot...

... and slept some more. His favorite sleeping buddy is that elephant. I pushed it beside his pacifier to it would help keep it in while he slept...

...and we're still sleeping, here. This is his little room getup: connected to pulse oximeter, blood pressure machine, IV maintenance bag, and whatever syringe pumps that need to be running at the same time (anywhere from 0-3 medicines running in those, during certain times of the day.

He was just sort of a cute, but sad little blob today- either sleeping or laying there with a glazed over look. But, it was actually sort of a relief to see him like that because I knew we were doing our best to keep him comfortable in this painful process and situation. It was exhausting the day before to hear him cry so much and be in pain. All in all, I'm glad we have chosen to give him the morphine because I know the pain was much worse that it was even yesterday, and it will continue to worsen. He's going to need all the help he can get.

"Oooh, what's that? Your camera phone? Let's try and grab that to play with... Nevermind, it's not that cool.

Not feeling good here. Please get your phone out of my face.

He was so upset he fell asleep in my lap soon after his fit.

In addition, due to perhaps his medications, or pain, or other reasons, his blood pressure is a little elevated. They will be monitoring it to watch for any bad changes. Another thing that popped up today was his face had gotten puffy, especially around his eyes. Poor lil' bubby. This is probably just because he's on so many medicines that he has some water retention. They gave him a diuretic (medicine that makes you pee) to help flush out some of the extra fluid sitting around in him, and will keep a close eye on that. On the bright side, as pitiful as he looks, I think he looks even more cute because his puffy eyes make him look more like he has Asian eyes now. (;

Kal hasn't eaten anything- all day. When he wasn't sleeping or screaming, we tried a couple of times to feed him formula, but he wasn't interested. The doctors and dietician switched him to full strength TPN and lipids to make sure he's still getting adequate nutrition and amount of calories.

Jonald, Kayelee, and my mom came over to visit this afternoon/evening. When Kal saw Jonald, he perked up really quick and was kinda with it for a little bit, at least. Jonald even got him to smile, which was such a relief to see. It was just a sign to me that my sweet little boy is still in there, and I will see that side of him regularly again someday soon, but he's just not feeling so hot right now.

Tonight, the nurse gave him some more morphine. She also turned the oxygen funnel on low, just laying near his face on the bed, to help keep his oxygen levels from dipping down and up during the night and setting off the alarm. Hopefully this will help him have a more restful night's sleep tonight.