Our Little Superman: Kal's Life With CGD: Day +15: Trying Some Things

Woah, man! Kal only woke up once during the night last night! I even (almost) didn't have a sleep-deprived migraine when I woke up this morning! Oh my, it was lovely.

Kal is doing better with keeping his oxygen levels up. He only needs a little whiff of oxygen when he's sleeping. He's much more awake during the day now. Also, his swelling is going a little bit down, which I imagine makes Kal feel much better.

The doctors are now wanting us to work on trying some things in order to prepare Kal to go home in the near future. Like I mentioned before, Kal needs to:

Take all of his meds orally (instead of IV like he has been doing)
Gets his water retention under control
Wean off his oxygen and pain meds
Have no signs of infection/fevers/graft-vs-host disease
Try the bottle, but no big deal if he doesn't want it, even for a few months

As part of that plan, Kal's PCA morphine pump dose was decreased today. Uhm, yeah, about that. I think it was too ambitious to try that today, as both the nurse and I have had to push his button to increase his dose several times today. Yesterday, when he was still on the higher dose, I might have pressed his button maybe once, if not at all? I'm going to discuss with the doctors tomorrow about holding back another day on starting to wean him from the morhpine, and see if they can bump the dose back up to help him be more comfortable and heal a little more.

Also, we tried giving Kal only a couple of his medicines orally today. Yeah, he wasn't too happy about that. It seemed like it still hurt too much to swallow, so he would just hold the medicine in his mouth until he either choked on it and spit it out, or coughed it down somehow. He threw up twice in the process, despite taking over an hour trying to give them to him suuuuper slowly. He's been a lot more pukey overall today. Yesterday, when he was on the higher dose of morphine, he had only thrown up twice, and it only had a small amount of blood streaks in it. Today, with all of the throwing up going on, it most likely opened up those scabby sores again, because it was much more blood tinged. Poor thing... I also think if his pain is better managed, he may take his oral medications a little better if it didn't hurt so much to swallow.

In between throwing up, Kal is generally pretty happy. He has moments where I can see my old Kal Kal boy's personality shine through. Kal had a particularly fun time being naked during and after his sponge bath today... and who doesn't like a cute, naked baby, right?! (Sorry in advance for the Kal overload. He was fascinated with my phone today, especially when I would turn the camera around in "selfie" mode so he could see himself. This kid really is SO vain. Hehe!)