Day +6: Mouth Sores are the Devil

 
Oh goodness me. I hate mouth sores! Kal's mouth is starting to have a bunch or sores and it's causing him a lot of pain. It's so painful to the point that most of the time today, he didn't even want his pacifier- which, by the way, he's usually addicted to like crack, in case you didn't know.

Kal was extremely grumpy throughout the night last night. He kept waking up and crying and then falling back asleep. This morning was worse. And the thing is, his mouth sores aren't even in their worst stage yet. It's when the white outsides rub off and get straight up raw is when the real fun starts... Yeeesh. His counts pretty much jumped off a cliff last night. For example, his white blood cell count went from 1,700 to about 600 in a span of 24 hours. That's nothing to worry about. They were expecting his levels to bottom out soon, but bottoming out this fast (instead of having a more gradual decline in counts, which happens in some patients and others not) results in one day you're feeling pretty okay, and the next you're rolling in pain.

Luckily, Kal kept down about 4 oz. of formula. That's a wonderful thing that he still ate today, with his sores getting so much worse. Success! Finally, he was so worn out from being grumpy that he conked out in about 5 seconds once I swaddled him and started to rock him in the rocking chair.

After a little while, Kal woke up from his nap by choking on his own mucous. Yeah, let's just say that rude awakening didn't make him the happiest bird on the perch. Because Kal was feeling so yucky, we decided we should give him some oxycodone to help him out a little bit. He was too cranky laying in bed, so I spent a good while just sitting in the rocking chair with him. I gave him snuggles, played with him with some toys, and rocked him to help console him.  He didn't want to take any formula from me. He just kept fussing at me and making scary gagging faces.

Ooh, this toy is distracting... Me likey.

"I don't feel good. I just need a hug, Mommy."

My friend swung by for a visit and brought me some yummy lunch and dessert (P.S. It was cheesecake, in case you were wondering... I won't blame you if you are jealous while reading this, haha). She brought her ADORABLE baby who is a little less than 2 months younger than Kal. They're little buddies from the nursing lounge at church, and so when Kal realized his friend was there, Kal perked right up and was playing with him and they were trying to touch each others' faces and hold hand. It was so cute, and such a nice relief to see Kal being his happy self again for a small moment. And then, the oxycodone started to kick in. With that, his anti-nausea medicine, and some Benny (benadryl), it helped him to get a nice nap in afterward.

After that awesome nap, Kal seemed to be much happier. He was smiling at me again and playing well in his crib. Oh, it was such a relief!  He eventually even drank 4 oz. of formula again and kept most of it down. He then played in his crib, kicked out freely, and talked nonsense to me while I was trying to watch America's Got Talent. Silly boy. (: It was such a break from what we were going through this morning. Probably a tender mercy from God that I wouldn't go completely cray cray today.

Nom nom nom.

There's that smile I've been missing!

Thankfully, Kal fell asleep very quickly for bedtime. I think his little body was just worn out. I held him a little while longer before putting him in his crib, just to take in the moment, just to breathe in the smell of his soft, baby skin. I love this little guy.

Because Kal had woken up earlier from gagging on mucous, the nurse decided to put on the pulse oximeter (tracks pulse and oxygen levels) just to be safe, so we would know if he was having a hard time breathing during the night. Just a little bit ago, his oxygen levels kept dipping just slightly below what's normal and then going back up again, which kept setting off the pulse oximeter alarm. To help this, the nurse came in and turned on the oxygen on low and placed the funnel close to his face, just to ensure he was getting enough oxygen through the night. It's mostly just a precautionary measure, and so that darn alarm won't keep going off during the night.

All in all, today was pretty darn hard. Kal threw up 5 times today, but it wasn't as big in volume as it has been before. It was mostly yucky mucous coming up. I think the thick mucous kind of stops most of the liquidy formula to come up sometimes. The bad thing is we know it's still going to get much worse, and probably will do so very soon. The good thing is that it won't last forever and someday soon his cells will start to grow back, he will be engrafted, and then we'll be close to being on our way home. In times like these, it's all about keeping the right perspective in mind. It gets you through days like this.