Day +8: Pump Up the Jam

Sorry about the corny title. I couldn't help myself, and now I have to pay for it with the awesome song getting stuck in my head...Gotta have a little, silly moment in my day, at least. (;

Last night was another rocky one. He would wake up screaming every 2.5 to 3.5 hours, where the nurse would have to give him some more morphine and every now and then I would have to rock him back to sleep. By the time it was time to get up in the morning, I was drained.

Upon hearing about Kal's pain during the night, his doctors agreed he would benefit greatly from a PCA (patient controlled analgesia) pump. It administers a much lower dose of morphine but at a continuous rate, rather than giving a higher dose every 2 hours. Essentially, it helps prevent the "high" of sudden relief of pain, and then the "crash" of immense pain once the dose wears off. Instead, it requires a lesser dose because it's keeping the pain continually at bay, thus needing less of a dose to help him feel better. There's a button I can push to release a little bit more morphine if I sense that Kal is still having pain beyond what's being covered by the continuous dose. It's kind of weird thinking I'm the one dosing my child with more morphine, if necessary. But, it's also good in a way because I can sense when he's starting to feel it more and I don't have to wait for the nurse to come in, set it up, get it signed off by another nurse, etc. like when he was just getting 2-hour doses, meanwhile screaming at me in pain.

Finally tuckered out after an eventful night and morning.

After a couple of hours to let the new dosing of his pump start to work in Kal, I found out what a wonderful blessing the PCA pump is. It has helped Kal not be so restless while sleeping, which helped me actually get a good nap in as well. After that, I was feeling so much better and energized!

Although he was very glassy-eyed today, it was such a relief to know Kal was finally much more comfortable. It was so sad to see him like that, just devoid of any emotion, unless it was pure rage and pain if he could cough, throw up, etc. There would be times where he would half-way wake up and then just make little whining sounds like "Ehhhh eeehhh ehhh." Oh, it just broke my heart. It was like everything going on in his body was almost too much for him to handle. He just looked sad and exhausted. But, like the nurse told me yesterday, "It's hard work for your body when you have no white blood cells."

It's like he wants to smile, but he forgot how to. (;

Helloooo... Anybody in there?

The doctors didn't have anything new to say, other than allowing the PCA pump to be set up. They reassured me again he was "right on schedule." It's kind of weird to hear that, in a way. I don't know exactly how to react to that, because what are you supposed to say? "Yay! My son is in the worst pain of his life, but he's supposed to be!" or "Oh, I'm so glad he's supposed to be feeling this way and experiencing this." Uhm, no. But really, when so much that could be going wrong isn't going wrong, that really is something to be happy about, even if the situation you are in is kinda crummy.

Kal continues to have issues with water retention. Now his hands, legs, ankles, and feet are swollen. He's my little Asian marshmallow. As sad as it looks, he's still so cute- I love him! (; Some good news: the diuretic they gave him again today seemed to help get a lot of fluid out. They'll have to continue to monitor his swelling, though, as precautionary measures.

Getting his fill of mommy snuggles (:

In addition, Kal has been having issues with itchy eyes and face. Whenever his hand are free, they're almost always rubbing his eyes. The nurses and doctors reassure me this is a common side affect to the morphine- that it releases histamines and causes itchiness. He's been prescribed some anti-itch medicine (via IV) to help with that.

He fell asleep while he was trying to rub his eyes.

There were a couple of moments where he sort of perked up today. Once was after sleeping for a long time (pretty much most of the morning and up until about 3 p.m.). I was able to sit him up (still holding onto his sides) for a little while and he watched a little toy that played music and flashes lights. I was also trying to play peek-a-boo with him, and sometimes he would sort of twitch a half smile at me. That was good enough for me! The other time he perked up a little was when Jonald came to visit and Jonald was able to hold him and rock him for a little bit. He was just watching me and looking at things around the room.
All in all, that PCA pump was heaven sent! It has made him feel a lot more comfortable. We will be watching for changes in his other symptoms, but expect things to still get worse for a little while longer. I just have to keep reminding myself that there WILL be an end to his pain one day, someday soon.